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.