MSA, body care, vanity and things like that…

I’ve been thinking these days, enough is enough, I need to shave my legs. I know that with MSA you have bigger problems than that. But I must say that I (also) already suffer from the degradation and decay of the appearance. I was a rather vain person, hair, clothes, fingernails, manicured feet, have played a big role. However, not because of the others, because of myself.

And that is noticeable now.
I am just over fifty, but before my diagnosis I was estimated to be forty and I felt like thirty. Before my diagnosis. So from one day to the next, I went from the status of vain lady or fashionista to the category of “gray mouse”.

I know how much that affected me when I cut off my hair. It’s short and gray now. Dyeing and hairdressing is something I could no longer do on my own, and unfortunately I can’t pay for it now either. Just like for fingernails and pedicure. That was super important, I was every two weeks at nails make and I had perfect red nails and perfect feet. Now I have everything cut short, of course I can’t polish those anymore. I know how I sat with long red fingernails, perfectly dressed at the first MDK visit, and got zero points.

So I put the idea in my head, I finally have to shave my legs. Could actually also not matter, except for me no one sees anyway, what is under my pants. Nevertheless. And that, where I can’t take a step without help.

It made me think about how it would be if I still had my ex-partner or if I was married. And how do all the married women do it? Men have other problems… So even though I can hardly walk, can’t even eat with a knife and fork, it bothers me when my legs are unshaven, when my eyebrows are untweezed and my feet are undone. I’m sure some people think that my problems are not big enough…

So I prepared everything nicely in the bathroom, so that everything was ready, eliminated the danger of slipping… and then I staggered into the shower, sat on the shower stool and started. Legs smeared with shaving cream and then shaved off. To that I must say I’m very glad for the safety standards of today, because a razor blade and my fine motor wobbly hands are a very awkward combination. With blades that were still common during my childhood, I would have surely cut off my legs. Which wouldn’t even have been that wrong – one less problem….

In any case, after I have smeared the bathroom full – and myself too – I have smooth legs. After half a day’s work. At least in places I can see. Where I can’t see, who knows.

Moral of the story: no matter how deep I’m in the mud, I want to look as good as possible.

Not obvious 

I live my everyday life, day in and day out. The highlights, the special moments consist of banalities, so in comparison to the past at least. In the past, the special moments were when I went surfing, went to a party, flew on vacation, went to my home country to visit my father… I think of all this because Facebook reminds me of a post I wrote 3 years ago. Pictures from my home country. Yes, it used to be like that, I was always “home” for Easter and Christmas. Visited my old dad, my sandbox friends… I used to go to the market to shop and cook traditional food for my dad. I loved it, he loved it too. 

I used to go on vacation at Easter and Christmas, preferably to Brazil for surfing, but after my mother’s death I decided not to do that anymore, but to go to my father instead. He is old and who knows how much time we have. I wanted to spend time with him, a few times a year to spoil him and make him happy. A few years ago I brought him a walker and a folding wheelchair. To make it easier for him with his chronic asthma and his 85 years. Now I am more dependent on a rollator than he is, the wheelchair is coming closer….

It made me appreciate what we humans take for granted as long as our bodies cooperate. This gave me the idea to write down my everyday life and the thoughts I have. It often seems sad and tedious, I don’t see it that way at all or not often, I’m glad that I still manage my everyday life and am almost not dependent on any outside help. Yes, frustrating it is already often, because everything I do is in the shadow of “How do I get from A to B?” Sounds trite, right? Just get up and grab something out of the closet. Not for me. First, it’s a power up and second, the whole thing is a hazard. First check the obstacles, then calculate what I can lean on. Do not forget that I can stumble on the most impossible things. Be prepared for the fact that my field of vision is very narrow and it is limited to a small radius around my feet on the ground. Not looking up at the TV or out of the window would cause me to lose my balance. So noises and happenings from the surroundings, like a honking horn, children screaming, an overtaking cyclist outside, are frightening disturbing factors for me, because I don’t know what it is, what it means for me and all these influences often make me fall.

Everything constantly falls out of my hand, I knock things over, cause small and larger accidents, am constantly bending over to pick up what I have dropped or knocked over, am constantly cursing because I have no patience with myself and often roll my eyes “How can one be so clumsy” – as an MSA-C affected person I am particularly plagued by ataxia, which favors this “fidgeting”.

So everything I do is in the shadow of these movement disorder.

So walking from A to B is NOT OBVIOUS.

Here’s what a day in my life looks like:

00:00 AM – I try not to sleep until midnight so I can sleep through. Clear everything out of the way to the bathroom so I don’t trip at night. Clear everything out of the way around the bed in case I get restless or fall out of bed in a dream, to avoid hurting myself if possible. If it goes well, then I have to get up once around 4:00 to pee. If it goes badly, I can’t fall asleep at all (until 3:00-4:00), or I wake up around 3:00 and can’t sleep after that. Or I wake up around 6:00 and have to go to the bathroom every half hour, and my bladder plays a trick on me, because I don’t have to. But as soon as I’m in bed, I get the feeling again that I have to go. That leads to the fact that I am often at 5:00 or 6:00 up, wide awake in addition still and if I fall asleep then nevertheless at 7:00 or 8:00 o’clock, then who knows when I wake up. Because my 8-10 hours sleep I need to function.

NOT OBVIOUS: just sleep, go to bed and get up the next day refreshed like a normal person.

NOT OBVIOUS: keeping my bladder in check, listening to my body’s signals and trusting them. Because my bladder often says “I have to” and then I don’t have to at all, or if I do have to, then “I have to right now”.

10:00 AM – At some point I’m awake, the DHL man rings, or my phone, or I have a therapy session, have to make some phone calls. I could get up earlier, of course, but what’s the point? Often I lie awake in bed and dive into my past, into my memories. I hear the street outside getting livelier. People are on their way to work.

NOT OBVIOUS: to be part of this society. Many in their cars on the way to the hated work would trade places with me lying in bed at first glance – but only at first glance. I would gladly trade places with anyone. No matter how dumb the boss, no matter how weird the colleagues.

NOT OBVIOUS: Just go jogging after getting up….

By 12:00 – I get up, brush my teeth, wash my face, I take a shower, I get dressed. Make myself a cup of coffee. How long it all takes depends on how I feel. For everything I have to secure myself so that I don’t fall over. Washing my face, for example, can only be done by leaning against the wall and washing only one half of my face at a time, to avoid closing both eyes, because that would immediately throw me off balance and cause me to fall. Showering is also a time-consuming affair, every movement must be calculated beforehand. Dressing while sitting: the times are over when I could put on pants while standing. I can’t close a bra backwards either, fine motor skills are too bad. And the strength goes out if  I try longer. I used to work for a company that sold underwear, among other things. I often wondered who buys these love killers of bustiers. Now I know.

At least I am glad that I can still do all this without a nursing service.

When I’m done, I make myself a coffee – trying not to have any accidents – and check my voice. During this time I also take my medication, which actually consists of my trial medication and nutritional supplements, I’m not so keen on tablets and don’t like to take them, especially out of  fear of side effects and out of fear of losing my personality, especially as far as psychotropic drugs are concerned. 

If it goes badly, I have no voice at all before 12:00, my vocal cords atrophy, which causes throat clearing and coughing, which causes no voice at all at first but my voice is there afterwards. Lax-Vox helps!

NOT OBVIOUS: jump out of bed quickly and be “normal” within seconds.

1:00 PM– Breakfast. Yes, this is normal for me at this time. The fact that I eat breakfast at all is already a progress, because just the thought of eating triggers gag reflexes in me in the morning. The importance of having something in my stomach and thus having energy is clear to me now. I use a trick for this. I try to bring the taste of past Brazil vacations into the house, and I prepare something for myself that I ate for breakfast there: Fruit salad made of exotic fruits, yogurt and cereal or cornflakes. Tastes almost like a vacation, to perfect the whole thing I order sun-ripened fruit from Mexico or Brazil. It’s certainly not ecological, but one have to sin somewhere. All this I try to prepare without major mishaps, not to hurt myself and not to turn my small kitchen into smeared battlefield.

NOT OBVIOUS: to eat something quickly, because even to grease a loaf of bread is complicated. That’s when I grease the whole flat not just the bread.

Afternoon: is my most productive time. My voice calms down, my vision returns to normal. I only have to be careful with this fresh fruit for breakfast, because it can affect my already sensitive digestion unfavorably, so it nails me to the toilet. As we know, I am bad at running and the poor bowel management is known to be an early symptom of MSA, I like to prophylactically spend a longer time on the toilet after breakfast, just to avoid that something unpleasant happens.

My therapies also take place during this time, if not I do exercises on my own. Physiotherapy, occupational therapy, speech therapy. If I had been so conscientious before, I would certainly have the figure of a model. On the other hand, the things I do now are the exercises I used to ridicule. I used to ridicule Nordic walking, now I would be happy to walk with poles.
The exercises are annoying and exhausting, balance, strength, tongue exercises, etc. Afterwards I am always a bit like pudding. I don’t know if the whole thing does anything, the constant degradation is noticeable, but I imagine that I feel better afterwards. Blood pressure in any case. And how it would be without, I do not know.

This time I also use for annoying paperwork, for offices, health insurance and so. 

In this time also visit comes. My caregiver, then we “gossip a round”, so coffee and cake and she helps me in the household, so to speak she actually does my work and she removes the traces of my misadventures. She shops for me or picks up my order from the supermarket, she drives me to the pharmacy. We visit offices or doctors. So she is “my arms”, “my legs” and also “my voice”.

I do my laundry – by elevator to the basement, downstairs, into the washing machine and hang it up… This is a highlight and requires a lot of energy, but I am proud that I can still do it myself…

NOT OBVIOUS: going outside, taking a walk, just jogging or biking. I am also unstable outside with the walker and without company I would fall. So I only go out when I have company. Often I observe enviously active pensioners with their walker by flitting. What complicates the matter is my sensitivity to light, if it goes badly my eyes water and I see nothing. And what’s even more stupid is that when I’m outside, I’m so preoccupied with road conditions and balance that I hardly notice the area because I’m only looking at my feet. The carefree time of visiting the park, walking in the forest, simply strolling is over…

6:00 PM – Prepare a hot meal. This is also one of the highlights. It used to be more of a chore, now I’m glad I can still do it. It is often so that I paint things in head as easy. Then it is not simple. I recently dreamt up baking a lemon cake or I recently breaded schnitzel – after that I almost had to renovate the kitchen. My kitchen is tiny, which is good because I can’t fall over so easily, for that everything has to be planned step by step, of course I don’t want to burn or cut myself. A mashed potato degenerates into an elaborate undertaking and turns my tiny kitchen into a battlefield.

NOT OBVIOUS: drive quickly to the supermarket if I am missing something. I have to think well about my weekly shopping. I am rather uncomplicated, if I am missing something, however, I never had such a well-filled refrigerator as now. Something that also seems so natural: cleaning up one’s own trash. That’s where poor energy and miserable fine motor skills often make it a challenge. Doing the dishes and cleaning up the kitchen after me takes a long time. I find it relieving that I don’t have an audience, because the whole thing certainly looks like torture.

8:00 PM – Dinner. Comfortably to the television. Or Netflixing while doing so.

NOT OBVIOUS: what sure looks cozy is often not. No cinema, no dinner, even if no Corona-conditioned lockdown would be, I would be in lockdown. That is now forever and ever.

What was still normal: eat with knife and fork so that half does not miss or that the whole enterprise does not become embarrassing. I also miss a glass of wine, but I can no longer tolerate alcohol.

9:00  PM – closing time. Getting ready for bed or for the couch. The best part of the whole day. Just doing nothing, switch off my brain and watch something stupid. Shortly before falling asleep, the memories from a previous life come back, perhaps with wet eyes and the repetitive question that is never answered: “Why me?“ To prevent this, I try to wach something until I fall asleep.

NOT OBVIOUS: Not linger too long on the couch or I won’t get up. 

What has become obvious, with a few exceptions, it will remain quiet, I’m sure most people don’t check on me at all and it’s pretty quiet.

That’s what a day in my life looks like, pretty unspectacular. But I would be very happy if it would stay like this for a while. That’s what I’m fighting for, I don’t know with what prospects.

To accept what is

I have not been in touch for a while now. I am busy with setting up my new apartment, my new life. And I would have liked to train myself to the old level – which is unfortunately difficult. According to my study doctor, I haven’t changed much, but I do notice changes. Especially balance and speech. Now I have bought a new rollator, the usual ones are too light and unstable. So I can get out of here without any problems. The thing is called Veloped Sport, fields, cobblestones and cross-country are no problem. After a few weeks I can say more about it.

The last few days have also made me realize that I am “really seriously” ill. Quite often my head says “no problem” and then my body puts a stop to my plans. Again and again I make the experience that the physical is one thing, but to cope with the whole thing psychologically is a really heavy task. It’s not just realizing the illness, but accepting that it won’t go away and this uncertainty of what the future will bring is bad.

If I hadn’t already been paralyzed when I was diagnosed in December 2018, there’s no doubt it would have blown me away. Instead, the fact left me breathless – suffocating under the weight of uncertainty about my future. Would I forget to walk, forget to talk, spend my last days unable to move in diapers? Would I be chained to a catheter forever? Would I be in pain? Moreover, the question of “what if” distressed me and made it impossible for me to see a way forward.

It was painful, both emotionally and physically. Emotionally, I struggled with (and still do) not being able to do all the things I used to do with such ease. What I enjoyed, what fulfilled me. Physically, I felt broken and sick trying to live the life I had before. It wasn’t working: my body was betraying me, not playing the game.

How could I reconcile my determination to live a happy life, to be “successful,” with the limitations of now that had now been imposed on me? I disgusted the new “me,” I felt ugly and embarrassed. I still do sometimes, there’s no getting around it.

It took me a long time to realize it. I can’t do everything I did before anymore, at least not without it making me sick and sad that I’ll never reach the bar I set for myself. But that put me in an even bigger dilemma: I didn’t want to give up. I mean, I was told to “fight it,” both by myself and by others.

My stubbornness and determination to live the way I used to was a battle against my disease. And it was one I was losing every day. By looking behind me, fixed on the path I had walked before.

And yet I kept fighting, even though I knew it was not only pointless, but harmful. It was harming my body, my mind. Nevertheless, I continued. I did it because I felt that accepting my situation would be “giving up”. That by adapting my life to my illness, I was giving it victory. It was this constant, wasted struggle that made me lose over and over again.

So now I am changing my mindset: Instead of fighting for my old life, I started fighting for my “best life.” And I can only do that by accepting how things are around me, by grabbing the resources that are available to me at this moment, by accepting that things had changed. By accepting that I had changed.

It wasn’t until I stopped fighting to squeeze myself into a pair of jeans that no longer fit – it wasn’t until I accepted that I had to live my “best life” differently in order to live it at all – that a way forward began to appear. Acceptance is not giving up. Acceptance is adapting my life to make the most of it, to give myself the freedom to be the person I so desperately want to be.

Still, my old life is something precious to me that I lost. Nothing will ever change that. But I have these conditions now, and anything other than making the best of them would not be me. 

MSA patients are stubborn(?)

I read a forum post the other day where relatives were complaining about how stubborn their patients are. Then I thought about myself, yes I am stubborn too.

In the forum someone had complained that the father refuses to “pee in the bottle” and that is why he falls on the way to the bathroom. This is high risk and not a good way, definitely. I wonder how old the father was, but I suspect mature adulthood. I wonder, is this the fate of a grown man to pee in a bottle? Is it understandable if he doesn’t want to do it?

Well, it is not easy for everyone involved. The child is worried about the father, the nightly urgency is also known to me. I think they all don’t sleep well. So I can understand the patient, I would also rather crawl on all fours to the bathroom before I pee into anything. What do you do in such a situation? I think you have to be creative and work together with the patient to find a solution that is good for everyone. The patient must understand that his relatives are worried, but he must not be forced to do anything.

I do not have this situation. But I can understand the suffering and burden of the relatives. There are many reasons for stubbornness. Why is it so?

I start from myself. This disease has already taken a lot from me, I can’t do so many things – and  what remains is getting less and less. As long as I can, I want to make my own coffee, wash my own hair, make my own bed. I am aware that I can fall and hurt myself. That is why I am very careful, I am also very slow.

Exactly because I am aware that my time is limited, I have no tolerance for things that are not good for me. I dislike topics that don’t interest me, I can’t be persuaded to accept something I’ve already rejected in the past. There are people I just don’t like – that some don’t like me – is OK. I don’t want to be liked because of my illness. I don’t like children because they are children, I like some because I like them. I like to try things before I ask someone for help, even if it looks like torture. Screwing a bottle cap on involves fidgeting and dropping. Still, I want to do it myself and not have someone do it for me.

I had a lumbar puncture once and afterwards I had a hell of a headache. I spent several days in bed afterwards. Every trip to the bathroom was torture because moving my head was like hell. Every time my brain touched the skull, I thought I was going to faint. Then someone – surely well meaning – suggested to push a toilet chair next to the bed. I thankfully refused, and I hope I managed to be polite, because in my mind I could shot the person together with the toilet chair to the moon. Me? Certainly not.

Is that stubbornness? If yes, then I am very stubborn. Does that make the life of my fellows difficult? I hope not. One does not want to be a ballast.

The question is where stubbornness ends and recklessness begins. Because you should never be reckless. Falling, beating yourself up or breaking something is certainly the stupidest thing you can do. Then you really become ballast and the recovery from the injury is questionable. I have been in the situation of fearing for my own safety a few times. If it comes hard on hard, I think I would ask for help because I am already afraid of injury.

Don’t be too proud to ask for help when needed and don’t treat your patients as if they have always been so frail. It is not easy to accept that your body does not do what you want it to do. Be patient and tolerant with each other. The solution must always be acceptable to both parties.

How I move…

…now depends on many factors. How did I sleep, the weather, did I drink enough (and I don’t mean alcohol), how strong are my back pains, were the last days physically exhausting ?

In another life I have always liked to walk, I have never been a runner rather a walker. But I did this extensively. The camera backpack on the back and go. From Stüttgenhof through Lindenthal to the Rhine. Along this to the Südbrücke, over the Rhine and on the other side to the Hohenzollern bridge /Dom.  Light candles in the cathedral for the grandparents and the effzeh. To drag me to the Rudolfplatz, to have a look in the shop window at photo Gregor. And finally take the line 7 home.

And today I’m glad when I walk 800m with the walker or walk through the bathroom hands-free without being knocked down by the hangover.

My sister is of the opinion that I would be seen at 6.00 in the morning (first tablet intake), but at the latest when I go down the stairs to get outside, how the day will be.
She also hears whether I am tired when I am driving on the rollator (uneven rolling due to swaying).

Not only that I am infinitely slow (for me the normal speed is already slow motion) and also my complete body feeling /~ perception is shifted. Especially I notice this when I stand in the door frame and try to bring my back completely to the frame. Then I have the feeling that I have to go back much further than how I feel.
Meanwhile I stretch myself at every aufsteheń, no matter if I climb out of bed or get up from the chair. In the morning before getting up I stretch the hip flexors by letting one leg hang out of the bed at a time. Several times a day I support myself on the wall or windowsill and try to move my hips forward without letting the heel of the leg that is stretched backwards lift off the floor. Depending on the shape of the day, I manage to walk 3 steps upright before I am pulled down again with my upper body.
If I then try to rebel against this by tensing my abdominal muscles, everything I have drunk before comes back up again.

What we at NeuroPhysio have been doing from time to time recently is a kind of circuit training for all extremities and from all sides. Right side – belly – left side – belly – 4 footrest – heel seat – on the knees- and finally stand up over the right leg.
If I have stretched or been stretched in every position, walking is much easier for me. My orthopaedic physiotherapist also gives me tips and training strategies for a better gait pattern.

I also try to do a lot about weight shift, which, when I try to walk freehand, looks like a dancing bear on the move. And when I try to get out of bed, I feel like a little seal on the prowl.
If I want to start moving freehand, I have to balance myself first and then courageously move my left foot forward first. Once I get going everything is ok as long as there is no slope coming towards me.

In closed rooms I am sometimes a bit complicated. I always belong to those who drop everything rather than run 3 times. It is so to speak deeply rooted that when I get up I have something in my hand. Accordingly, getting up is usually a bit difficult. In these situations I sometimes only needed my little finger to get hold of something. Or the other way round it only takes a touch to get me out of balance.

On a day like yesterday it is really suboptimal with the movements. It was quite warm and oppressive. The first round of physiotherapy still worked out quite well. When I filled up the tank I was already slowing down. On the way to the second round I had the feeling that the heat was already building up inside me  and was glad not to have to do any active exercises.
I would like to sit somewhere and pour cold drinks into me.

You put a lot of effort into a little bit of of Life



Socially responsible Shopping


In my previous life, I was very fond of shopping. So not shopping, but shopping. I was always up to date on what was new in the candy department. I find new supermarkets totally exciting. I can spend some time in the international department and browse around there. And in foreign countries even more so. SPA markets in South Africa were the absolute hit. Or in the middle of nowhere a warehouse, where you gave your note to the woman with the curlers and got a box of food back.

And today? 16 years the Rewe on the Dürener was my supermarket. Whether it’s Saturday morning at 7:15 after the night shift or at 11:00 before the late shift.
At first I was just slower but you can compensate for that by leaving some of your groceries at the checkout AND memo to me: no more bulk purchases.

If you use the shopping cart as a substitute for a walker, buy a bottle of eggnog to bake cakes and the lady behind you in the queue says: “In her condition I wouldn’t drink alcohol”. At first I thought I had misheard, but I got the valuable tip that the yoghurts always come up.
While the cashier helped me to put the things into the car.
Memo to me: go shopping acyclically, test the online order service of Rewe.
That was before Christmas and had an effect on me. If possible I order food when it’s my turn to shop. These only need to be picked up. And when I go to a store, I try not to buy more than 6-7 items. Because I can still manage this number. You don’t want to hold up the business.

For the last few weeks, I’ve been in the ambulance for pain control. Why am I telling you this now?
I’ve pretty much taken all the side effects. Palexia makes my walking insecurities even more apparent and so I know what it’s like to slide my face over the asphalt.
Amineurine dampened me so much that by 2 p.m. I was already sitting in my armchair completely exhausted.
Arcoxia didn’t help at all
Now I’m putting a buprenophin patch on it and we’re going to get to the dosage.

The side effects I mentioned earlier pretty much threw me back. And I am only now starting to walk short (4-5 m) without a walker again. However, it only works moderately due to the increasing combat toormia. But back to the Rewe .
About 3 weeks ago I came with walker from a nearly empty Rewe. I stowed away the bag and started to fold the rollator. Somewhere someone honked for his life, but did not think about the fact that I was meant, you can see that I was on.
But apparently I was not fast enough. Because the window pane was turned down and a very sympathetic voice shouted: “Go ahead” and 10 seconds later: “Get in and get out of here”!
Memo to me: look for another Rewe and next time give the right answer than driving away speechless

Trappen in endless slow motion

Trappen in endless slow motion…

…that’s what I feel like now. Especially this morning when I was spooning my breakfast egg and it took forever for the spoon to work its way through the egg and recharge it. Sometimes I feel the same when I get out of the car!
The annoying thing about it, you can watch it wonderfully, but you wait in vain for an impulse that shows you the direction and the speed to pick up a bit, your body doesn’t obey you anymore, so not always!
It is controlled by someone else! And that one takes his time, a lot of time. Besides, it is damn exhausting. If I hadn’t destroyed bags of sour gummy bears and coke bottles, I might have reached my ideal weight again. But up to 10 bags of the little friends from Bonn, they also had to convert into energy. And I have discreetly lost weight from the time I was in rehab until now. Well, the cold turkey – I’ve been clean for 6 days. Eat very healthy.

Speaking of food, when you work your way through the forums on food intake and multisytem atrophy, there’s very little that’s been proven to help. The ketogenic diet is highly recommended and taken (by affected people)! If you ask your neurologist or Prof Wenning, you will get the answer: “Healthy”. Aha The ketogenic diet is a kind of low carb nutrition and is characterized by the fact that the body learns a new way of energy production through food.
By eating a lot of healthy fats and very few carbohydrates, the body enters a state called “ketosis”.

In this state the body burns fat instead of sugar as fuel for cell energy. Due to the lack of sugar molecules, the liver is forced to convert fatty acids into so-called “ketone bodies”.

And these ketone bodies have anti-inflammatory effects and can help with weight loss.

A successful ketogenic diet must meet the following criteria: The liver produces ketone bodies as an alternative fuel to glucose.

No effect without side effects: LCHF quickly becomes malnutrition if you are not careful. From a poor quality of sleep, hypothyroidism, dry mucous membranes to LowCarbGrippw, plus fatigue, weakness and headaches!

So I try to be healthy for me, because I’m weak enough as it is!
At the moment we could also shoot a daily soap: A house takes from                  ?????? except the nephew child, but with all pets

The week before last, I was on the road almost every day, drinking coffee, visiting my ward, the zoo and at the home game against Wolfsburg in the stadium. Sunday I was as ready as a bun. I could hardly get up because everything hurt. In another life you went to dance in the canteen (great concerts of Köbbe’s underground) until 5.00 a.m., took a shower and then went on early duty! Or came Wednesday morning from the night guards picked up a Reissdorffässchen and drove directly to Belgium to niece and nephew who were on holiday there. I miss these times

New year new luck or something like that

Happy new year and only the best for 2020, I wish you !
I think on 08.January you can still say that.
Did you all come across well?
And because 2019 has ended rather modestly, and I have refreshed my bruises, I was looking forward to the start of the 52 week project, the magazine Chip Foto +Video.
To concentrate on something different.
For me, photography is always very relaxing, unless I have taken a course with Oli and still have homework to do.

1st week – 1st topic #go out and do it, you always find something.
Unfortunately, it only became a mobile phone shot on the way home. But he made it to the title photo of the blog entry.

This week’s topic is: The architecture of the sun!
Maybe I have to change the topics here and there, because the sun looks rather bad this week.
And also for the week, when it comes to the frozen bubbles, I have to come up with something else. Or I try it in the freezer !

What else has happened?
– Biohaven or Bonn has not yet contacted us regarding the start of the study
– we once thought about holidays on Pellworm, while there was something on TV about Bali and Cuba
– sleeping is rather mediocre, if you know good relaxation techniques, please contact me (Jacobsen and autogenic training are not my cup of tea)
– the effzeh stumbles a bit through the preparation! I hope he can continue the last games of the first round

Otherwise, I took an MSA “break”. I did not read in any forum and was not very disciplined concerning my exercises.
I just had a lot of fun!

PS: I now have a list of all REWE stores where you can get Lukas – Podolski10 – ice cream (POLDI EIS)!  Yeah \0/ \0/\0/


Alex, Jessica und Marion in Domburg

Hello, everybody.
First of all a Sorry that we were so “lazy”! But it all came at once and until every authority had what was needed …well!

But there is still something nice to report! The weekend before last I was swimming in the sea (completely) and the effzeh won again in Freiburg for the first time after 23 years. What a day!
The penultimate Thursday it started. At 11.00 a.m. we made our way to Domburg with a lot of luggage. Where we arrived well after 2.5 hours. After a small refreshment and a coffee we could move into the apartment. But hardly arrived… well, a fall belongs to it! That just always presses something on the mind!
What helps against it: a view of the sea, enjoying the sea air and shopping in foreign supermarkets ? for me highly exciting and if there are still so nice ladies behind the scenes strawberries and pineapples for a peel or cut. Simply divine!
Of course we forgot the shopping list in the apartment! So shopping according to gut feeling 🙂 and that’s what we have done!!!

When I went through the drinks department, I just thought where to put all the empties? So typically German! But there was a tapas evening under the radiant heater on the balcony!
I slept quite well, only until I was right… the mattress was so soft and had no frame – hard work.
After a coffee and breakfast cantuccini we went to the beach. From our apartment, a stone’s throw away!

After a mixture of breakfast and lunch and probably the prettiest iced tea in the world we walked along the beach for more than 1 hour. I was so happy that I could hold my camera well, even if my hairstyle, including that of an alpaca, resembled. Running close to the water was great

The fresh air was good!
You could watch the ships on the horizon and I had to think of Henning and our slightly adventurous plans! The captain and the instructor! Inside I had to smile. Jessica scared the seagulls up.

And we were looking forward to Saturday because we wanted to go into the water.
Blown by the wind we went to the Dörfli, did some shopping. And after another round through the supermarket we sat again on the balcony, chatted and sang songs of the respective playlists! Of course this reminded me of Mauritius where we sang John Denver and Elvis songs to the guitar on the street at night! I remembered the smell when you sat in a taxi and drove along the sea for the first time, like in Colombia! Every holiday had 1 very special song. The first time Egypt e.g. you from Ten Sharp or Guantanamera on Cuba! Great was also when we wanted to bring Grönemeyer closer to the inhabitants of the Netherlands Antilles!
Alex S. That was about the same as your video from the Nepalese taxi you sent me ????

Sufficiently strengthened we went down to the water. My only worry was how I could get back to my position without falling over when the next wave came.
The water was refreshingly cool and after sufficient acclimatization I was suddenly inside. With one exception, I am always overcome by this calm and lightness in the water! This calm floating! And nowhere you can dive / float so relaxed as in Egypt.

Up to the time when I notice like sh … Sea water tastes good
Afterwards we walked along the sea for more than 1, 5 hours and arrived just before the blue carpet! The flood came!
So completely in the style of South Africa we sat down on a cooled glass rose (or Aperol spritz) in a street café.
For dinner we went to eat Mexican spare ribs!
The music reminded me of México and irritatingly also of New York! After a final cocktail we found ourselves on the balcony again! ? It was a highly emotional day for me,
On Sunday we went out for breakfast, in the supermarket we bought the standard food for home (Vla) and then headed for Cologne.

Dear Intensive Care Unit and all those who participated, thank you very much! I was very happy and really enjoyed it!
It wasn’t the last time I saw the sea ✌?

Alex and Jessi, mydears thx a lot!

First week at home

What I was looking forward to, on my own bed, standing in the kitchen myself and cooking or baking something. The three Cats, other TV programs except Kabel1 and Vox, on real Wireless, LTE, Cologne and much more.
But what was ahead of me in this first week, holy shit I should have hung on for another ninth week.

I was at the Customs office, the Public order office, the Road and traffic office, Health insurance, Pharmacy, the Neurologist (because it was so nice, twice), the GP, the City administration, in the Medical supply store to measure stockings, brought the walker for inspection, birthday gifts, shopping and much on the phone, With the Alliance, the Health insurance company and many others.

Tip 1: Never forget to fill out the form G0512 and send it to the federal government, if it is the one who pays for it. Otherwise there is no money.
Tip 2: when filling out the application for a disability pension, I would always ask for help again. I got it from the city administration. Everywhere I would have got an appointment only in September, with the city administration it took exactly 3 days. Besides there was a list of the necessary documents. And I filled them up with all the findings and reports I had. And ask before how long you are still in “sick pay”. So that nothing gets lost. I am glad that now everything is on the way. Contradiction with the degree of disability, pension, “MDK”, movement (ok approx. 20 boxes are still to stow). Only the tax for this yeas is still pending.
In the evening I was usually so down that I fell asleep in the armchair before 9pm. Mostly so deep that my sister had problems to wake me up for the 10pm medication. And when I was in the bathroom after and wanted to go to bed, I was awake again ? Thank God the podcast season started with the preparation for the Bundesliga. Drei90 and the FC podcast are my favourites when I wake up at 3am.

I already cooked and baked. And the first time I made “cauliflower schnitzel”. I say, the cauliflower was very tasty but: what a mess is that with the breading.
Oops, almost forgotten: On the 18th of August it goes into the air! We fly with a Cessna over Cologne. I chose the Rhine, the cathedral and the “Müngersdorferstadion” ( ? ).

And at the end of the week my new phone comes with the contract extension ? Those, who know me, know which color it will have.