New troubles- new start…

As a disabled person you face not only the change of your entire health. You also have to face the system and the other people which can be quite tough sometimes. Most people have no idea what it means to be disabled and what everything is included in it. You can bet the first question of the people would be what happened to you which might not be very pleasant especially when you have still not got over it. They often ignore when you give invasive answer to them and insist on you to tell them. Beside this lots of them think it is just that you sit on a wheelchair and that´s it.

Dear all…. It is not only about it… As a disabled person you are mostly considered as a mentally ill person as well. I would say that sometimes you are even not considered as a person at all which is quite sad. When your life is changed in so terrible way then you have to make much more effort to be able to live again. Much more effort than the others. And in the end despite all your effort it can happen you will be stuck at the beginning. This happened to me right now. I am in a quite unbelievable situation. After two operation of my spinal cord it seems I will have to face another one as the latest MRI showed my spinal cord is compressed again. I was already operated by the best surgeon who can be found here and I am going for another consultation to him. The question is if I should let him operate on me again or not. The spinal cord is compressed exactly at the same place like a year before. Therefore I decided to stop telling my story and start writing something like diary from the hospital so everyone can see better, the system which is here and which is completely stupid.

I am already here for a week. The first day when they should have accepted me, I came at nine in the morning, but I was not accepted until 16.30. During this time I was having a check-up at the anaesthesiologist and after that I was just sitting in the corridor and waiting. The next day, the only thing which was done was a blood sample of which I was not told any results. During the ward round, the head doctor was laughing when the head nurse told him that I am going to be operated from the front and in another hospital. The other day there was another blood sample which was taken by a doctor from my arteries. However, he did not do that at once, so he was trying this in my left hand and then the right one. He managed it in the right one very good I have to say, but the procedure was quite painful. During the ward round the head of department had a big argument with my surgeon, who is his boss, about me and in front of me. Really very professional… The day after, I went for CT check up in the morning. Can you imagine that I was in the waiting room with an old lady who suffers from tuberculosis? It is already a few days after this and I was still not given the results of it.

Today they made neurological check-up of which I was also not been said anything about as well as rehabilitation check-up as I will have rehabilitation before and after the operation as well. However, this is all what I was told about it… weekend begins and I will see what it will be like…

Veröffentlicht unter My Story | Verschlagwortet mit , , , , , , , | Hinterlasse einen Kommentar

Friends – next part

Susan, Denisa, Jarka are special women. Everyone can bet on this. Susan became my roommate after Zdenka had left. Smiling Susan, I could call her. Most of the time she was in a good mood and she was making funny comments to all what happened around us. She was a great support to me especially during the ward rounds. There was one every early afternoon with the doctor who was responsible for our floor and once in two weeks there was a big ward round done by the boss of the rehabilitation centre. The everyday ones were ok for me, but the main ones became step by step a nightmare for me. Right during the first the boss who saw me the first time in his life was really unpleasant to me. He rebuked me for sitting back on the bed while I was waiting for him to come. He said that this was completely unsuitable position for my back although I tried to explain him that this position is the one in which I was able to get rid of the pain. I have to say right here, that I was rebuked many times for this sitting during the first stay in the rehabilitation centre while being there the second time, they were more than satisfied with me regarding this position while being on the bed. It is quite difficult to know then, what is the right thing to do, when you get opposite instructions J

Beside this he was not satisfied that just before his coming I was working on my computer, so during his check-up, my laptop was lying on the bed next to me (he never said anything to those ones on the fifth floor who were considered as VIP ones for this). Furthermore he disliked the fact that progressively my left leg was getting worse which he considered as my own fault with a comment that I had not been doing the rehabilitation in full and that I was lazy. I guess I do not have to say that I felt like an idiot and really ashamed after those check-ups as usually lots of staff from the rehabilitation centre was coming with him. I might be wrong, but I think that no patient should face such behaviour, even not from the boss of such a big centre which helps hundreds of people a year. In my opinion things can be said without offending anyone, in a polite way and in a way which shows the patient that the doctor really cares for him/her.

I will write again about this man, but later as I had a few more conflicts with him during my second stay.

Veröffentlicht unter My Story | Verschlagwortet mit , , , | Hinterlasse einen Kommentar

Just Friends – part 2

One Saturday I got to know two more guys. Duro and Miso. The first one who started to talk to me was Duro. It was in the swimming pool. He was really not ashamed of start talking to an unknown person and he straightly asked me: “What happened to you?”

“Nothing much, my backbone must have been operated. What about you?” I replied.

“I was run over by an Indian on a motorbike” was his answer. At first I thought that using the word Indian he thought an idiot who ran over him and caused the whole accident. Later I got to know that he was really run over by an Indian in Venezuela J This was a little bit funny, but his accident itself was not funny at all and Duro was terribly injured. At the beginning he was not able to do anything, just lie down on the bed. He could not move his legs as well as arms. It was a really hard time for him in which he became aware how vulnerable a human life can be. It took him quite a lot of time to be able to stand up on his own feet. However, his leg and arm stayed damaged. Luckily he does not need a wheelchair. He just needs help when doing something more difficult either in walking or anything what is done with arm and hand, like opening a bottle of water, or doing buttons. Despite all the troubles connected to his stage he is always full of energy and in positive mood. He also makes a lot of jokes which I really like. He is not sorry for anything he did in his life and I think it is the right attitude to life.

The other guy, called Miso, was a bit different. Younger than me and we used to make fun of him especially regarding his girlfriend as he made a promise to himself to have sex with her after he is married to her. Of course it is really nice they made this kind of promise to each other, but it is a real question if this is reasonable. Miso is also a very interesting guy. He came to the rehabilitation centre as he fell from an old ruined caste window and when somebody asked him what he was doing there is always answered that he was looking for a princess J On the other hand, I know it was not easy for him as well because it was in winter and that meant he had to wait for help quite long while it was freezing cold outside. He was lucky not to freeze.

Both of them, Miso and Duro are my friends now. I can call them at any time and I can talk about whatever I want which is really great. Moreover Miso is getting married in May and we are going to his wedding. I am happy that at least Miso was able to get back to work although it was not easy for him because the bank for which he used to work changed his position only because he was ill for several months. I think this is unfair, but there is nothing what can be done about it. I do not like the way people behave to people because it is sometime clear that they have no humbleness inside them and they think that nothing can touch them in their comfortable lives. However, everybody of us should be aware of the fact that life is not easy and can be terribly changed in a second.

Veröffentlicht unter My Story | Verschlagwortet mit , , , | Hinterlasse einen Kommentar

Friends in Rehab

People… it is sometimes so funny how people can change the world around you. One of my roommates, Zdenka left after a week, but in the meanwhile I got to know Susan. A woman who was as old as me and to whom I could talk about whatever I wanted. We were like twins and the other roommate, Maria, became “our mother”. As Zdenka left, I managed to arrange that Susan could move to our room. We did not have much of our programme together but the rest of the day we used to spend together until I got to know some other people as well. Each of them was specific and each of them gave me something. Therefore I will mention them one after another.

One of them was a young man called Vlado. It is interesting how destiny can play with people. I got to know him while my individual training as we had this in the same room although we did not have the same coach. At first this guy was strange with the whole behaviour he showed to people. At the beginning he came to the lesson and did not say at least “Hello” to me. However, he was talking a bit to his coach when she asked him something. This way I got to know that he had a really strange accident. My individual training contained also special kind of massages during which the parts of my back which grew together were torn to release the pressure on my backbone and the parts around it. This was a really painful procedure and I could not help moaning. After a few times, he started to comment this procedure, which was done to me; and we found a way how to talk to each other. On the other hand I noticed he was not talking to anybody else, so I tried to ask him about it, but he did not want to talk. Once I met him in the corridor near the place where we used to play table tennis. He was sitting there alone and looked so unhappy that I just sat next to him and asked: “What happened to you?”

“I do not know, I just do not remember… “ he said.

“How this is possible? You really have no clue of what happened to you? Did you have an accident? Where there at least some people who could tell you something?”

“No, I just know that my brother found me at my work in a strange stage in which I was just running around the same place talking silly things, with injuries on my head”

“What were the injuries? Can you describe them to me?”

“No, but I can have a look into my documentation if you want”

This way I got to know that this guy was really terribly injured on his head which caused him several neurological problems which can never be treated. According to the injuries as I consulted that with some professionals to find a way how to help him, he must have been attacked by somebody. We spent a lot of time talking. I was helping him to get over the troubles, showing him that he already managed to make a real progress. Despite all the serious injuries, he was not just lying in bed, as doctors expected him; he was able to walk, using just one stick. This was just unbelievable and really positive. Of course, he had also problems with talking and some psychical disorders, but he was slowly getting better and better which was great. The only problem was that he could not see this. It was a really hard work to show him that life did not end for him, but in the end he became even much better than he was before coming to the centre and left with smile on his face.

Veröffentlicht unter My Story | Verschlagwortet mit , , , | Hinterlasse einen Kommentar

rehabilitation centre – part I

Rehabilitation centre – I was sent to the best one in Slovakia. I was driving there with my father and we managed to get lost on the way as the marking of the road is not the best in the world. The building I could finally see was really huge, it was much bigger than I imagined. My father helped me to bring my things upstairs and left right away as he was going home by train and bus which would take him couple of hours. The head of the nurses took me to my room. As I entered the door I noticed three beds and started to be worried a little bit how my roommates will look like. However, there was no time to wonder about anything as my doctor came to ask a few questions. It was a really nice woman who seemed to be really friendly and kind. She was talking to me for quite a long time, asking a lot of questions about things which she was interested in. My roommates came after she had left. The first one was dark haired lady using sticks to walk. Her name was Maria and later she became my “second mother” as she cared about me quite a lot and we spent almost the whole time together there. The second one was blonde called Zdenka. She was nice and she showed me the facilities. We were also together in the class which was called “the common exercises” where more people were doing exercises having one coach who was showing us what to do and how.

To be honest I did not expect the programme to be so tough. I had to get up at six every morning to be able to go to the bathroom as there was a bathroom for our room, but the shower was also for the room next to us and it took time when six people were using it one after another. We had breakfast at seven and then at 7.30 my programme started. I started with painting lesson which I had chosen the day before as the “work therapy”. At eight there were the common exercises. Then there were individual exercises with my individual coach and swimming pool after that. The lunch was from 11.30 to 12.30, but we had to be in our room already at 12.30 as the doctor used to come for check up every day to see if we are ok. The afternoon programme started again at one with magnet therapy and therapy with electric current. Finally I finished at 14.30. I came to my room so exhausted that I thought I would die. My body hurt me a lot and I started to have problems with the orthostatic pressure which resulted in problems with fainting. They wanted me to stay in bed for a few days, but I did not want that. I wanted to be ok again and walk normally without any support, so I went on with my programme normally as soon as I felt at least a bit better after couple of hours.

However, what I noticed as one of the first things was the fact there were people who were much worse than me. It was a real shock at the beginning to see them and to deal with them especially those ones after strokes who had problems with talking and it was difficult to understand them. Beside them, there were also people without arms, legs or those ones with really ugly scars even in their faces. There was no way how to avoid them as they were everywhere. The only way was to accept them as they were and not to make a mistake to be sorry for them as most of them were too sensitive. They did not want people to be sorry for them. They wanted people to accept them as they were – I later found this myself.

At first I was talking only to the women in my room, but later I met great people who became my dearest friends. They gave me so much and I have learnt a lot from them.

Veröffentlicht unter My Story | Verschlagwortet mit , , , , , | Hinterlasse einen Kommentar

Coming Home

Going home, seeing my parents and my daughter again… I was so much looking forward to this. Especially because of the fact that while being in the hospital, and in the intensive care, my mum was also in a hospital, and intensive care, but in our town. She almost died as she suffers from kidney and urine bladder cancer which is even more complicated with her problems with breathing…

So, the day came and I told my doctor in the hospital that although I was grateful and liked him a lot, I hoped I would never see him again. They warned me that I have to be careful because in some cases it could happen the material could break or move, so then another operation would be necessary, but I hoped nothing like that would happen to me. I have already written some facts about the journey with the ambulance, so now I just have to say that when I finally saw the face of my father as the ambulance door opened, I was the happiest person in the world.

However, at home I found out that living with the screws is not as easy as I imagined. I could feel them by each movement I was doing and it hurt me really a lot. Moreover, my mum was suffering a lot because of press sore which she came home with from the hospital as the stuff was not changing her position while she was dependent from all the appliances. I guess this time was really hard for my father as well as my daughter a lot. They were looking after each other while I and my mum were not at home.

My first days were mostly about pain which I was suffering from. At those days I was taking painkillers a lot, but then I told myself that this is not the right way and I tried to look for other ways how to get rid of it. In the end I found it. Using breathing exercises helped me a lot. Beside that I was going on with the exercises I was learnt in the hospital. Day by day, step by step I was better and better.

I spent home more than a month when the invitation from the rehabilitation centre came. I was ready to go and be even much better. However, I have to say that God had another plans…

Veröffentlicht unter My Story | Verschlagwortet mit , , , , , , | Hinterlasse einen Kommentar

Next part of the treatment

Next part of the treatment was standing up or firstly sitting up. Maybe you think it is nothing hard, but then you are wrong. This was really difficult especially because of low orthostatic pressure and the fact that the first time they sat me up I was still having the drainage system in my lungs. I thought it would not be possible but the rehabilitation nurse helped me a lot with this. However, at first I was sitting just for 30 seconds and afterwards I was sleeping for more than 3 hours. The other times it was slowly better and better up to the point when I was finally able to have lunch while sitting on the bed. On the other hand I was really afraid of standing up as I could feel the screws in my back and the pain was very strong. However, this day came and had to try it. When I stood up, everything looked ok, but walking was really hard. My legs did not want to do what I wanted them to do. I mean steps were difficult to do. There was also funny side of this as each patient was still wearing the hospital night gown which is open at the back after at least a few days after operation. So anyone who was trying to walk in the corridor was there with naked ass J … or course all of them were wearing some underwear, but still it looked really funny..

On the other side, finally walking made me free or in other words less dependent on the nurses because I could go to the toilet myself, so I did not need the care of the urine catheter any more. However, I was really worried if there would not be an infection as the one I was given before the operation was not removed or changed during the whole three weeks. Luckily nothing bad happened… so I was looking forward to go home soon..

Veröffentlicht unter My Story | Verschlagwortet mit , , , , , | Hinterlasse einen Kommentar

The Treatment

The other part of the whole treatment is a rule that each patient after backbone surgery cannot go home other way than by an ambulance. This idea is not bad. However, not bad until you see the ambulance with which you have to go home. First of all, there is never just one patient there. To use the ambulance economically the ambulance must be always full. This means that they take all patient who go the same direction, but to different town. Practically in my case it meant that usually the way from the capital city to my town takes an hour drive, but using the ambulance it was more than four hours because the driver took first home the patients who were sitting. I had to lie down all the time – you have to think, what is the lady complaining about? It is great to go home and lie down the whole way… I would agree if they used a comfortable ambulance, but mostly they use those ones which are more than 15 years old. The bed is uncomfortable, old and narrow. Moreover, you are not tightened which means the whole drive you have to hold the pads because while driving you move up and down, side to side the whole way.

The same system is used if you need a check-up in another hospital. The only difference is that the driver of the ambulance usually brings you to a hospital and leaves you there because he has to go for other patients. Of course, he will come back again, but you have to wait for him. The last time I went for MRI to another hospital, it was an unforgettable experience. At 12.30 two men came to pick me up with a portable bed from the ambulance. First of all they had no idea how to put me on this bed as I could not move my left leg, had still a lot of tubes and it was forbidden to lift me up in a common way. After 20 minutes we found a way and went for a ride. An assistant from the hospital, where I was, had to go with me. During this ride, the assistant had to hold me all the time as there was a lot of danger that I will fall down from the bed. Finally when we came to the other hospital and the found the right department, the people from the department had a problem to find another portable bed for me as the drivers from the ambulance had to go away. I was not waiting long for the check-up, but I wondered about behaviour of these people. They took me the room with the MRI appliance and want me to move on the bed of the appliance. I had to explain them that I was not able to do this as I could not move my leg. So, when they finally understood this, they just took the bed from the MRI appliance away – which took 30 seconds and put mine on it with me. I do not understand why they force patients to move from one portable bed to another one, when it takes just 30 seconds to change one from the appliance to another one on which the patient is brought in. Afterwards, they just put me to a wall in a room apposite changing rooms and told me to wait. This practically meant that each patient coming out from the changing rooms could see me lying on the bed – I was wearing just a hospital nightgown and the urine bag was more than visible. After three hours, the drivers of the ambulance finally came and the assistant was allowed to come to me. They found out that my urine bag was full, so they asked the MRI personnel if they could change it for me as it could crack in the ambulance during the drive back to my hospital. This was a real problem to them as they did not have even a bucket where the urine bag could be drained. So the assistant had to take out the half of the tube and take the bag away to drain it in the toilet while another one was holding the rest of it to prevent leaking the urine on the bed. I guess everyone can imagine how ashamed I felt…

Veröffentlicht unter My Story | Verschlagwortet mit , , , , | Hinterlasse einen Kommentar

Intensive Care – Part 2

In the end I spent almost three weeks in the intensive care. I am still really grateful that the stuff there allowed me to have my cell phone and laptop by my side… Having these two things my time there was running much faster. However, it was not easy. My family and friends could not come to visit me as much as I would like to. First of all this hospital is quite far away from the place where I live. Secondly, they have their rules for visiting people who are in the intensive care. When my family came to see me they had to wear special clothing to be sterile. However, it happened many times that when the door of the balcony there was open, a pigeon or two came in and were having a walk inside J

Usually my day there started at five in the morning when a nurse came to wash me up and change bed linen. I loved and I hated this at the same time. It really depended on who was on duty. If a good person then everything was ok, but there were also a few people who just did not care so much if somebody suffered or not. Furthermore it also happened that they washed me with soap water, but they did not wash me with just water and they also did not put lotion on my body, so finally I came home totally peeled as my skin is sensitive and needs special care with urea. As the bed linen was changing they had to turn me first the right side and then the left one. This was unpleasant and painful a lot.. After this procedure I had time to have a nap because breakfast was around eight o´clock. What was funny, ( I mean funny if you like sarcasm) then it was the way how I was treated sometimes especially after eating. You know, when you eat even as a healthy person in bed, you usually made a mess. And as an ill person who is not able to move, be sure you make a lot of mess. There were people who came and cleaned up, but there were also people who just came and gave me a talking to this mess although they must have been aware I was a patient and could not tidy up myself J

The other thing was a ward round. Usually it was a small one and once a week there was a big one with the boss. You could recognize this with just watching how much cleaning up was done that particular day. At about ten in the morning my rehabilitation nurse came. For the first operation it was a young lady who I liked really a lot as she was doing her job in a perfect way. She always knew how to encourage people, she understood if my power was not good to perform something. Thanks to her I was stronger and stronger day by day..

Veröffentlicht unter My Story | Verschlagwortet mit , , , | Hinterlasse einen Kommentar

Intensive care unit – part 1

I was given just local anaesthetics for the thoracic drain. The doctor was nice and telling me all what he was doing. However, when I came back to the intensive care, the nurses were more than confused how the system I was given by the doctor, worked. It was quite terrible to lie down there and look at them how they had no idea what to do – it took just a while, but it seemed to me, like hours…

Spending time at the intensive care unit, seeing how the other patients were able to stand up the next day after the operation and most of them went home after a few days made me really depressed. I hated all the “journeys” for X-rays with the whole bed. I thought first that it would be much better if a radiologist came to me with equipment, but I guess that was too reasonable and made sense, so that was something what for sure could not be done. The bed was bumping up and down while my back was singing arias about terrible pain. Then waiting outside the door in the corridor where all the other patients are. All of them were looking at me. I wished I could have been able to hide somewhere because I was covered with a shirt, on the right side of the bed there was the bag with my urine and on the left side there was the system with all the liquid from my lungs. I was glad that the guy who was going with me was able to persuade the lady that the X-ray would be rather better to do on the bed and not moving me again on the hard table. First of all doing it on the bed was less painful and secondly we were told that the liquids in the drainage system should not have been mixed. After a few days the system, which was draining the liquid from my lungs, was changed into passive mode. This means that every two hours a nurse came and pressed the pipe to drain the liquid from my lungs… this was really horrible as I could feel bubbles inside my lungs and my breathing was even more limited..

Veröffentlicht unter My Story | Verschlagwortet mit , , , | Hinterlasse einen Kommentar