That was always my device (without the question mark), now it’s even more so. I’ve been in rehab for two weeks now and I’m slowly “old hand” here, I know my way around, I know which therapy room is where to find, I know if I want to get a banana for breakfast, then I have to be early.
Speaking of food: the cook and I had a bad start, he cooks some delicious things – although I eat vegetarian here – so I did him wrong. Only the breakfast and dinner I am I sick and tired. I can’t see any cheese and no white bread roll anymore. I have the privilege that my food is placed on the table, so if I don’t like it, then I have to go to the buffet and stand in line, like most others. Which I do for dinner to get some salad instead of cheese.
I know when free hours take place at equipment, treadmill and swimming pool, for Nordic Walking I can choose when I am free. Every day I go to the equipment training and to the treadmill. The number of visitors is limited and I usually don’t have to wait. With pride I can report that I can walk for 30 minutes without holding on. (I would never have thought in former times that I will book this times as success – wow, I made a success! – , because for a healthy person is trivial). Okay, I get wobbly sometimes and have to catch myself but at least I let go of the bars, swing my arms deliberately, relax my shoulder, look straight ahead and don’t drag my feet. After 30 minutes I’m also quite exhausted. So I practice every day, because „when the going gets tough, the tough get going“ – we use to say in Germany „only the hard ones come into the garden“.
Socially, not much happens here, I’m still an outsider, I don’t mind, but I can imagine that for a person, who has trouble being alone, it can be tough. . The smokers form their groups, the MS patients as well. I have a hard time because for them it is about how they come to terms with the disease, which is certainly not easy,. But for me it’s something different that matters – how I live with it – that death always for me a topic, to live with a black cloud over my head everyday. How do I live, with waking up every morning, with the question of whether something has changed, and that is never a positive change. How do you live with doing so much and never achieving success? The success should be, that it gets slower worse, which you can hardly measure – how shitty is that? These are the questions I have to ask myself, unfortunately. There is no choice, that is my reality. Helping would be, someone with my illness, with whom I can exchange and comfort myself and him/her, someone who UNDERSTANDS.
I had a consultation on incontinence last week. I know, shitty topic, literally, we all don’t like to talk about it. So, bladder: I have to look for a neurourologist, among other things they have an examination called “urodynamics”, there can be different parts of the bladder that are affected. There can also be done some things and it is determined to what extent the bladder is “nervous”. Urinary tract infections should be avoided, because this is very bad for us. Examinations, however, such as remaining urine examination can be almost done at any hospital. In addition, the bowel issues was made a topic, because the problem associated with it, is also widespread with us, and can extremely deteriorate the quality of life (as I find the word stupid). It’s about emptying the rectum every day so that there is no „traffic jam“ and no urge. One should do something with nutrition (flea seed shells for example) and because this is the case with most of us, one gets an electrolyte from the pharmacy (I already have the name, I just don’t want to advertise the preparation here, if interested write to me), this is not a medicine which is good first of all. This stuff makes the stool more “voluminous” so you can get rid of it easier. The brain gives every day an impulse to the bowel to “make room empty”, usually after breakfast. You should use this period of time and sit down on the toilet if you have to or not. Put your feet on a small chair, this helps the bowel movement and is also good for keeping blood pressure up. So you should teach the body to “make room empty”, to keep the rectum empty and thus gain a whole day’s time. If all this does not help, there is a mechanical way, a kind of enema, which helps and gives you time.
Now I am armed with knowledge and will look for a neurourologist at home and have my bladder examined to see how “nervous” my bladder is.
What I have become aware of, that I am using a kind of „avoidance method“. I do sports all day, which keeps me from digging deeper. Here you can’t avoid therapies like psychologist, social consultant or occupational therapy (?! yes, they want to know if they can still send me to work) I have noticed that when I start digging deeper, dealing with what I can and cannot do, what will never be the case again and what expects me, in best case it can be something done to slow down this progress, it all spoils my mood for days. There are also days when I can do this better. But I don’t want to occupy myself with it, above all, I don’t want to talk about. Many things just stoke my throat and I can’t talk about them. Thinking or writing is different. But there is nothing left for me, I have to go through this and learn to deal with it.
Speaking of talking: more intensive and more frequent speech therapy would be helpful. I think I will address that, group exercises are nice, but don’t even get a little close to my very first speech therapist, who I had at the beginning and who was great. And unfortunately my language is getting worse, and losing the language is one of my horror ideas.
By the way: my sleeping and eating habits are getting better and more regular. I sleep here more, already around 9pm and last week and I gained a kilo!