Forum Replies Created
September 18, 2020 at 12:33 am #366919
Thank you for listening and for opening up about yourself. I’m feeling better getting this off my chest and I’m starting be get more energy back.September 17, 2020 at 12:27 pm #366867
Yes, I know it’s a very difficult case, so many unfortunat things have happened. We had five years to seek compensation but that was changed to four without us knowing. We get a discount for her to receive other types of treatment, that she need. The biggest issue is her being in a pain all the time. Extreme headaches and her vision is affected by it. So noises and light causes a lot of pain.
Yes, thats correct. I deal with social anxiety and I have trust issues, I not saying all men are players but I never trust that someone could be interessted in a relationship with me. And I’m bad a going out and meeting people.September 17, 2020 at 11:29 am #366863
No, not me, doctors. Several specialist in the field. They doctors who were trying to treat my sister didn’t follow procedure. They suspected encephalisis at the beginning but never moved forward on that. Then they tried several different types of medicin, which the specialist said is what they do in a case like that. But if the patient dosen’t improve within 6 months you have to stop using it, in her case they opt the dosage. They went through a list of the different types of medical malpractise that happened, and weren’t able to tell us why they didn’t follow the procedure for the symptoms she had. They also told us that they had never seen a case quite like this. People who suffer from encephalisis for a long time without treatment are gonna become braindamaged. Because the inflammation damages the brain tissue. I depends on where the inflammation is located and how long its there.September 17, 2020 at 8:40 am #366853
But it is. Her leaning to one side and having one leg shorter than the other was noticable to outside family and the doctors . But than isn’t bad enough for a person to receive the operation. It was the way her spin was twisted (not visible to the human eye only by x-ray) and that she needed 4 disc removed that they performed the surgery. Same goes for myself, I too have scoliosis and I have seen myself in the mirror many times but never noticed anything until my fysiotherapist told me where to look.September 17, 2020 at 12:37 am #366843
Medical malpractise. We never got a diagnosis. We suspected encephalisis and so did they, but because she had a virus as well they started suspecting something else. They suspected brain cancer and when we found out that that wasn’t the case, my parents were devastated. No diagnosis no treatment. Just more medicin that made her feel even worse, but they just kept giving her a higher dosage. Which nearly killed her a couple of times. It’s a long list of things of things going terrible wrong. On the other and we had a lot of luck. She survived only because one doctor realised that she had scoliosis. She had it really bad and everyone of our friends and family were alble to notice it. We didn’t realise it before someone told us.
Also our goverment kept making cuts in the healthcare system, increasing the stress of the doctors and nurses. I think we were just unlucky.September 15, 2020 at 11:37 pm #366800
No. This is a country that’s quite wealthy. That’s why many told us to be grateful, because it is a lot worse in so many countries. We are known for having a great healthcare system, so people always asume that they would get the help they need. But the system is falling apart, and people only realise it when they try it on their own body. I think that is a contributing factor as to why so many people here suffer in silence. It is also the reason why I didn’t talk out loud about my problems until I was in my early twenties. Because if I have it bad what about them.September 15, 2020 at 11:22 am #366774
Reading it back like this, really makes an impact. My grandmother had a personally disorder and were taken it out on my family more than my dad’s siblings and there children. Which was hard giving the fact of our situation (she thought my sisters desease was a lie) choosing favorite grandchildren (we weren’t good enough) and we the were the only ones cut from the will. The emotional blackmail came from her.
The psysical and mental abuse started in school when I was 12 to 15 years old. A group of boys were violent (one girl became hearing impaired in one ear) and two of the teachers bullied me. Called me stupid in front of the class, when my anxiety was at a high. They knew about my situation. I had a year on a different school where the girls all choose me to bully, the boys had some episodes of violens. One of them had their wrist slashed right in front of me. I had the first depression at this time, which I dealt with on my own.Then I had two years in a good school, and they gave me space to deal with my anxiety and I was top of my class.
I than had a two year apprentenship with a boss who tics of every box of being a psychopat. I pushed myself so hard that I had a break down from stress, causing damage on my memory. This was the day before my final exam. I received the second highest grade, my boss was furious.
7 years then past with me dealing with stress and anxiety and trying to find work. Only had temp jobs nothing permanent. Then my sister had her concusion i that was a year and a half of peptalking and supporting her for hours every single day, whilst trying to deal with my own stuff.
But one of the hardest things is that I’ve never had a boyfriend. Something always happened, they moved away, got fired from work, droped out of school, ending things before they even started. Also never had a group of friends. I’ve been somewhat of a paria, being friendly with everyone but never had a group of my own. I only have two friends left, but they have a lot to deal with in their own life right now. Same goes for my collegues in London, I don’t hear from people anymore they are also in a stressful situation.September 15, 2020 at 3:39 am #366749
Sorry “been on edge for years” wasn’t the right words. She locks it up, hides it and keeps on going, anytime we need help she’s there. But we can see how hard she is trying to cope with the situation. We never received any help with my sister because no one believed us. They thought she was just a teenager who wanted atention.
My sister became ill when she was 11 (i was 7) she had a virus and other fatal desease I think is called encephalitis. Inflammation that is one of the most painful things to endure. She was screaming from pain sometimes up to 20 hours a day. The inflammation is causing damage on the brain and the longer time goes by without treatment, the more damage is caused. It took us 7 years of fighting before she got the treatment she needed. Treatment she only got because she has scoliosis (the most painful back surgery there is) that is antibiotics. By then the damage was done. Then in 2015 she passed out (due to pain which happens often) and receive a concussion. Another damage to the brain, which took 2 years of treatment before she could leave the house.
This is some of the things that happened. She dosen’t look brain damaged, and she’s increbible smart, but that all comes down to where the inflammation was located.September 14, 2020 at 10:15 am #366703
Thanks for your reply.
Sorry my post was a bit messy, my head was spinning. My mom is the rock in our family.She’s the one who is always there and keeps us going. Not just emotionally but financially. That’s why seeing her break down crying, was so terrifying. If she falls we all fall. Seeing us children struggle is so hard on her she can’t even talk about it. I’ve had a break down from stress 10 years ago and I know how hard it is. I think the best for me to do is to focus on helping out with the daily chores and give her Space. That is also very helpful for me as it gives me some structure.
My sister on the other hand is the one who makes me feel selfish when I need a break to recharge my batteries. Saying things like if you think you have got it bad how do you think I feel. She takes it personally that I need a break from people (not just her) because it makes her feel like I hate her or that she is a burden to me/us. She wants me to take responsibility for her taking it personally. But that is simply not something that I can take responsibility for. It is a burden for me to try and keep myself going, trying to set bounderies (that she never respects) and then trying to make her understand that giving me space isn’t me hating her, but me trying to cope.
as for my dad. He’s never been able to face problems, he thinks everything is fine. Maybe that is his way of coping with this (his mother had a personally disorder but he didn’t want to face it). He is now in charge of dealing with my sister, so to leave me and my mom out of it.August 13, 2020 at 2:28 am #364662
Thanks for your reply. I’ll try and shift focus to where it can be useful rather than wearing myself out. And try to look at the bigger picture. It’s hard but practise makes perfect, sometimes I’m doing it and I’m not even aeare of it.August 13, 2020 at 2:23 am #364661
Thanks for your reply. That is a really good idea, I’ll try to start and be nicer to myself instead instead of constantly banging myself over the head. Thats probably a good way to start.