The hut 2

Talking to God is sometimes really hard. Once I heard a question if God listens to all prayers people have. The answer was yes, but He says no for some of them…

The most difficult for me is to have faith, a real faith that God leads me the way which is good for me. It is because I thought that I know what the best for me is and now I should believe in something what is completely different from what I have ever known. I was told that I have been losing a lot just fighting with God about this, not letting Him to lead me..

Now, when I am worse again, I became somehow fully or in different way aware of the fact that I really CANNOT be cured. This means nothing can change this. However, this does not mean that I stopped hoping for a cure.

I am just trying to explain what I have been going through. It is obvious that spinal cord injury changes completely my life and also life of the people who I live with. I know, that the fact I am a survivor is important and that I have to try to live my life, but I agree that to live a really enjoyable life is utopia in my case and I would say it is the same also in all other cases of people who survived.

When I say this to the people who are around me, they mostly think I am just depressed and I should take pills as I have not accepted my condition yet. They say that despite the fact I have to use the wheelchair and the fact my illness is incurable, I can do anything what I want.

If this was true, I would be riding a horse with my daughter, doing jogging with my friends or just spending time in much more active way. This would be really great.

Most people feel helpless when facing with the consequence of spinal cord injury and the activate a self defence mechanism. The real consequences of spinal cord injury are not something what we talk about. Not even in public. We cannot use our bodies independently which makes us feel uncomfortable and embarrassed. So, we try to hide what we can. I think most of us do that for many reasons and more or less unconsciously. We do not want people to feel sorry for us and we do not want to hear all the “empty” phrases that could diminish.

However, this is spontaneous human reaction. All who see us and “love us” are very sorry for what happened. All in all, I can identify with attitude.

On the other hand it is important that being paralysed and living with something incurable is not fun and it is also not nice.

I do not want people to feel sorry for me, but on the other side, my spinal cord injury is visible to anybody, I cannot hide it somewhere and just say that not much has been changed.

I can challenge my limits and show the others that I am strong, but it is actually hypocrisy. I have seen many paralyzed people really exhausted and frustrated from their situation who have been trying to pretend that everything is ok. But in the end there was a while in which they had to confess that they have been doing that because of their families, friends or other close people as they cannot let them see that they feel bad and that they are not happy. They think they have to give example all the time, especially if they have children. They want the children to be proud of them and they want them to believe that they are really strong as they do not want them to be worried.

Therefore, they put a mask on of the spinal cord injury every morning. But this is just a mask…

All of them… me as well… we would like to take this mask off. I also confess to the fact that I would really like to take it off, smile fully and make all my dreams come true. However, more I would like to see the people who I really love to be happy and not see them suffer for the consequences of my stage.

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I like the saying which expresses how time can be different: A minute which you spend in front of the toilet door is much longer than the minute which you spent already behind sitting on the toilet  :-)

For me there is a big difference in time which I spend active way – working, exercising or simply doing things which I like and the time during which I feel so bad that I have to stay  in bed.  At this time I feel myself completely helpless.  I want to change it, I would do whatever I can, but my body just does not listen to what I am saying.  After some time I find strength to get up again although it is very hard and painful.  My friends just wonder how I do this and I wonder myself as well to be honest. On the other hand, I think it is not important to know how it works, the important things is that it works.

I love doing exercises and walking. Both are great and I feel like I was well doing it. Exercises are done with my personal coach who I like very much. He became my friend and we understand each other in a great way. He admires my determination. However, he is sometimes angry with me when I am too stubborn and want to do things which I might not do rather.

I still remember how I called my coach for the first time and how surprised he was when he saw me in the end. We started slowly just with a few exercises done on the floor. At the beginning he was a little bit afraid that he could hurt me but later I encouraged him to do more and more and trust me. In my opinion trust is very important. I know a lot about him and I like the way he has been working with me. Later, before the second operation I was in a really good shape, doing my work-out on the equipment. I was better and better feeling in a great way when the second operation came. I had to say that my coach stayed in touch with me all the time I spent in hospital and thanks to him the second operation was much more easier than the first one.

At present I am quite concentrated on indoor cycling which I have fun with. I did not expect me to be able to do it, but one day I just made a decision and tried. It worked, so I tried again.  I started with just sitting as my coach did not want me to stand up, but when he was not looking at me, I had a try :-)

My back immediately became hard and I felt sharp pain inside, so I had to sit back. I got scared that I did something wrong, so for a few minutes I was just sitting and cycling. After a while I tried again, with much more focus on strengthen my back.  This worked in a good way and I managed to do a few steps. I guess everybody can imagine what my coach told me seeing this. However, we both knew that I would do that again next time :-)

I am not sure if what I have been doing is right. My friends, especially those ones from the rehabilitation centre are very much afraid of me. because of the extremes in which I am trying to stand up more and more and the stages in which I suffer from pain, tiredness, problems with breathing or urinal problems very much.  Time will tell us….

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The hut

Some time ago I was recommended to read a book called The hut. I like this book very much because it showed a lot to me. I have already read it many times and I tried to find out what my own hut is. I could not have found the answer and there were whiles in which I felt like the God up there was just beating his head while saying that this girl must be for sure the slowest to understand in the world. Suddenly there is an answer and I know what my hut is. And I have to say that it is the hardest thing which I have ever gone through because it is not my illness as I thought.

I was told that I want to put my life into what I imagine and that I do not want to accept and be happy from what I have been offered or what I already have. Partially I agree with this. Just partially… On the other hand if I have not imagined for example that I would walk again at least a bit, if I only accepted the fact I was paralyzed, I would have never been able to stand up and walk.  If people do not imagine that for example they could win Olympic games, they would never have been able to do anything for it.

In my opinion, what we imagine can bring us to something new, nice and really positive. It is just about if we want it or not. Sometimes we feel much more safer when we do not try, but in the end not trying is more painful.

What I have noticed lately is that I really started to have problems to explain how I mean some things, especially to people I really care for. I want to say one thing, I work hard on the way how to explain, I am open and often the result is the other side understands it in a completely different way. Inside me, I laugh sometimes about it because there is nothing else what I could do. You know that, sometimes, the more you try, the more it is spoilt.  And suddenly you are in the middle of a situation in which you totally do not want to be and you feel like a big idiot.

While talking my intention is to show people maybe different point of view of what they are normally used to. It is because I think that my experience through which I have been going right now can sometimes give them advantages. However, I might be wrong…

Beside that I always consider my behaviour. The way I behave, how would I feel if somebody behaves the same way to me? Would I still be so sure that what I do is right?

Furthermore, I know that all of us are dying. But when you are already told that you are dying your brain starts to work in a different way. I would like to prevent all those thoughts connected to what I managed and not managed to do, but I can say it is really hard…

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Going up again 2

What really helps me every day is the people around me, especially when they are in a good mood, work routine, exercising and walks which I have been doing as often as I can. Walking calms me down and while walking it seems like nothing changed in my life. I am fully aware of the fact I cannot do things as I used them to do, so everything is different, but I am trying not to concentrate on what I have lost.  However, there are situation in which it can be clearly seen that I am different from the others. I have been thinking of this a lot from time to time and I think there must be an advantage of this. I see life from another perspective I would say. I appreciate every day I am here. I love when sun is shining and when days are warm. I really enjoy when I feel breeze on my face or when I can watch how nature has been changed now in spring. I never knew that green colour could have so many shades. Do you know that when it is raining really heavily it is the same sound like when steaks are grilled? It seems like one part of my life has been closed, but the other one opened.

I have decided to turn everything into something positive and look at everything in the way how it can be done and not how it cannot be done. It is a great challenge. It is hard. It is fun. And hopefully it will bring something positive to the others as well. It is the way how I fight with my illness.

One of the really positive things is that I have tried cycling and it worked. First I was a bit worried that I had made a bit hasty decision, but as I am stubborn, I did not want to give up.  Therefore I decided just to try, without thinking of it completely. I even did not have an idea how to do it and how it could work. I thought it would be the same like when doing the indoor cycling in the gym. I can say that it was not like that J I wanted to be completely independent while doing this, so I did not want anybody to help me. For doing it, I had to use both my legs. The paralyzed one, with muscles which I used instead of those one which are paralyzed as well as the right one which is partially ok. This was a real test of all the time that I spent in the gym doing exercises and learning how to use all those muscles which I had never used before properly. The beginning of my cycling was unsure.  After a few minutes, it became better. However, whole in whole, it was completely different from cycling which I used to do in the past. It could bring happiness into my heart and I was proud of myself that I managed it. People around me were also very happy and it caused sensations among my friends and people who are like my private fan club J A lot of them are in a very similar stage like mine is and they admire the  way of how I decided to fight with my illness and the fact I am paralyzed.  I just do not want to sit and wait for what is going to happen without doing anything.

Once it was one of my friends who told me there are situations in our lives in which it seems we are losing everything we have, but it is always worth to fight – that is what he said: “Never give anything to anyone without fighting – you might lose, but you will be sure that you have done whatever you could to make it”

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Going up again

When I was down in the dumps, feeling really depressed, I would say the worst thing about it was the fact I was going down as I could not see where it could end. Now, I think I have already been going up finally. It is painful, so much painful that I guess nobody can imagine. I have been struggling with so many problems, trying just to ignore them and go up and up…

It was really hard to make this decision to go on to be honest and I am still not sure if some of my decisions are right. However, I have already made them so I feel reliable that I should keep them. On the other hand, I feel often happy from any little thing which happens to me.

The first one which I have made is about doing exercises again. I have started to do them at home and in the gym as well. It is very hard as they are sometimes really very painful and I am not sure if to do them or not. Beside that I think they are good for me as they bring me energy and I feel myself quite happy when I finish something new what I was not able to do before. For example, indoor cycling. I was not sure at the beginning if to even try this, but then I told myself that if I do not try, I will not know, so I decided to do it. It is ok for my legs, but I feel a bit strange regarding my back as there are moments in which I feel it like the part in which I have the screws is like frozen.  I feel the same when I am doing exercises for my back, just lying on the floor.

Furthermore, I have been trying to work more and more. That is quite complicated from time to time as my stage is not good. However, I have found out that there is always a way, it is just about looking for the ways how to do it and not thinking of how hard it is when I cannot do it. Work-routine is great. It brings peace and stability into my life. Moreover, I feel really good when I do a good job and when I am admired, if I can say it like that J

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The sixth week and results

I got fed up of waiting for the results and everything. It seemed to be like a game in which me, as one side, and the doctors as the other side were waiting what the other side would do.  I have to admit that I was the one who blew a fuse and I decided to sign a revers and go home. Before I left, one of the doctors, the head one came to me and we had a short talk. I only got to know that my stage is incurable (I had already known that). They could see something in the MRI, but did not know what it was. More important was that they considered the operation as too risky – operate on the spinal cord for the third time and at the same place could damage the nerves which had not been damaged yet. This would lead to systemic upset which will lead only to worse the whole stage of me. I guess you can imagine how I feel about it. I have to say that I broke down and I have not found a way yet how to go on in my life. It is like in Hamlet play where he asked the world-known sentence: “Be or not to be”. That is the question. I would like to find a way what to do in my life, but right now it seems that my head is empty and I cannot find a solution. I am also aware how of the fact difficult it is for the people around me to support me, mostly those ones who are the closest to me. It seems like they do not know what to say and how to act. I feel like being frozen. I know what I need, and the same time I am aware of the fact I will never get it. Therefore right now, I am tired of fighting and I also stopped doing exercises. I do not fancy for them.

My friends from rehab centre are very good to me. They support me very much as they understand what I have been going through. I feel ashamed being down in the dumps. However, on the other side I was told that this is normal after what I had gone through lately.

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The fifth week in the hospital

A new week and new check-ups which should show how the pathways between my legs and head are damaged. These check-ups will measure the evoked potentials which are the electrical signals generated by the nervous system in response to sensory stimuli.  The first one would be somatosensory evoked potentials or just SEPs. They consist of a series of waves that reflect sequential activation of neural structures along the somatosensory pathways. The stimulation in my case was done at the tibial nerve (it is on the inner part of the calf. The result of this is important because of intraoperative monitoring during the spinal cord operation.  The check-up was done by a really great doctor who was very kind to me and explain the whole procedure to me, so I was very calm and without fear. The result of it was not good. The signals coming from my legs are so low that they are not suitable for intraoperative monitoring.

The other check-up is about motor evoked potentials or just MEPs. Single-or repetitive pulse stimulation of the brain causes that the spinal cord and peripheral muscles produce neuroelectrical signals which are known as motor evoked potentials. The check-up is a tool for the diagnosis and evaluation of multiple sclerosis and as a prognostic indicator for stroke motor recovery. This check-up also did not go good, so I am not very happy.

I noticed that it really depends on what kind of person a doctor is. There are really arrogant ones who communicate in a really strange way like they were God or they do not talk to patients at all. Meekness, understanding and time are missing to bring better conditions and comfort for the patients here.  Communication is very important. When patients understand what has happened to them, it calms them down and they can think more clearly and maybe in a better and more positive way. I feel the same about me. It would be much better if a doctor comes and talks to me openly about everything.

During the days and more during the night I often think of what I am not able to do any more. I know it is not a good way of thinking, but I just cannot help. Beside that I often dream about sea and swimming with dolphins or just watching the waves of the sea coming and going away from my legs or my dreams are about dancing, running or even horse riding.  Sometimes I think I go mad, but I was told that this is normal. I would really like to travel or go out more, maybe just for a walk – if being on a wheelchair and going somewhere can be called as a walk…

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The fourth week in hospital

New week started and there is still only little news which says rather nothing to me and it does not solve my situation at all. However, I am not the only one in such a situation. There are many women who are really very similar – just waiting to be said what it going to happen. Most of them suffer of a kind of cancer connected with their heads or neurological systems. The system here is focused on a patient, but I would say in a wrong way as it does not make a doctor to be responsible for a patient´s stage. They mostly let patients to make decision about themselves without explaining in detail to them what their situation is about. I think patients do not have enough knowledge to be able to make the right decision without having information from the doctor.

The system here is like this: you find a nep or you are told to have a tumour somewhere in your body. First of all you have to go for CT check-up and to get this you have to make an appointment. The waiting period differs, but it is mostly from 2 weeks up to 2-3 months with getting the results in 10-14 days after you have gone through the check-up. Afterwards you have to go for MRI which is the same system as CT and then you have to make an appointment at the surgeon. To get such a kind of appointment, you usually wait again from 2 weeks up to 3 months. However, you can make it quicker if you pay for that or if you try a private one. The prices differ very much from 10 euros for the enter check-up up to 150 euros. It depends what kind of problem you are going to solve. The rule is: the more serious problem you have, the more you pay. Finally when you are accepted in a hospital for an operation it can happen you will have to wait. The operating programme is done every day by the doctors. The urgent case coming by an ambulance after some accidents are always preferred which is good. Despite that I think it would be good to have a team which would solve only these kinds of cases. Then the doctors struggle with the situation about insurance companies here. There is a budget for operations and things done in a hospital, for instance there are money for only 10 operations of head in a month. If you are the 11th and if you are not an urgent case (I mean urgent brought by an ambulance right after the accident) then you are quite unlucky and you have to wait until you can be operated.  This way there are patients in the hospitals who wait 2 and also sometimes more weeks. And this is also the reason why from time to time the doctors welcome if patients decide to go rather home.

Seeing all those patients who are more or less lucky with their stages is not easy for me and makes me rather sad and sometimes even more nervous. Days are all the same with getting up at five in the morning, wards round around seven and then most morning and afternoon free.  The doctors are mean for telling me something regarding my stage. I have tried to talk to them several times, but without any feedback which would help me to solve my situation at least a bit. Hopefully I will get some news soon…

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Third week in hospital

I was finally transferred to the other hospital where I should have been operated. As I was leaving, my surgeon told me the operation would be at the end of next week.  The new hospital did not look very good – I really did not like the rooms and also the people do not look very friendly, so during the enter check-up I was so nervous that they could hear my heart beating as they were measuring my pressure.  I have been in a room with two other women – one of them is as young as I am and I want to talk about her to warn people of not being irresponsible regarding their health. She is 38 years old and she is suffering from lympho-sarcoma in the last stadium. She is really depressed because they took two tumours from her head and they are going to take one more from her chest.  She knew about the tumours already in December, but she preferred her job and she was very optimistic that everything would be ok until she fainted at home and must have been operated immediately. At this time it is too late to do something for her and the doctors told the family she had only 6 month if she even survived the third operation.  People should be more aware of the fact how vulnerable our life is. There are things and situation in which we have only one chance to do something. However, I know a lot of people who still think there will be more and more chances in their lives. From time to time I am very sad for them as I care for them.

Regarding me… it is quite another story. I talked to the doctor here who told me that he was surprised I was sent to this hospital as they ordered the first one to prepare everything what was necessary about the final decision of the operation and finally I came and the have nothing on the ground of what they could check my stage and make the final decision if to operate or not. He even outlined the first hospital made a mistake during my operations and now I was sent here and they do not know what to do. Therefore they decided to do more check-ups to investigate what happened, but this takes time and I guess I will never know the truth.  This is not helping me and I still do not know how to arrange my life.

Beside this I can say that the whole abnormal situation has changed me – first time in my life I have been so nervous and even angry. I have never been like this and to be very honest to you, I feel really ashamed with it…

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The second week in hospital

The second week started and I have still been waiting for some news. I have tried to talk to the doctors here, but they only told me that I must be informed by my surgeon who is not very often here.  At least  the CT check – up was done but there was not result for it at first and when the result came the head doctor was looking at me like I was there by mistake. He told me the screws were in the right position. So I asked him if he had already seen the MRI for which the answer was NO. Hours after hours and day by day are passing. The days are the same. We are woken up at five in the morning when a nurse comes, measures temperature and prepares portable wash-basins for those patients who are not able to have a shower. It is not very easy to wash yourself while you are lying in bed. Sometimes nurses help you, but they are happier when you do that yourself. Then the bed-linens are changed.  That is not a problem when you are not in the bed J  When you are the unlucky thing to be there while they do this, so have to cooperate with the nurses – this is the best way. However, it is also the most difficult one if you still feel a lot of pain.  So usually till six everything is finished regarding this and you have time till seven when the nurses’ ward-round comes before doctors. Breakfast is at eight and my whole morning is free, except the work out with my rehabilitation nurse.  I will write more about my daily programme later…

What I have noticed is that people around me often think that being on a wheelchair I am really stupid and they lie to me because they think I will not find out.  I do not understand it and I feel sorry for that. I do not know how it is possible, but I know when people lie to me, I am just too afraid to tell them openly.  The worst it is when this is done by the closest people I have and those ones who I love very much. It is not fair…

I have started new relationship with the nurses here. I think they like me quite much as I am always open to them and I do not ask them for many things. I often give them small presents. I hope this will help me after the operation.  I also like the rehabilitation nurse very much. She is very good and she does excellent job I would say. I can see that she cares for the patients here and she tries to do as much as she can for them. We work out every day together and she likes me because I am patient, hard-working and I understand in a full way that I have to work hard on me to be better.

The care of patients is not very good. Can you imagine there is only one enrolled-nurse at night – for more than 20 people? Sometimes you have to wait really long if you need something – for example to pass water or bedpan after operation.  I also heard from the other patients that nurses sometimes do not care even about people who are not able to move their arms and hands. So it also happens that you are brought with lunch which is given on a table for you beside your bed, and you are left alone – it is your problem how you manage to eat.

According to the latest news I was told that my documentation and MRI cds were brought to the other hospital, so the decision of my operation should be done soon…

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