Hi...
I am truly sorry for my lack of posts during the last week. I wasn't very well and then I was having a few problems at school.
So... a couple of weeks ago, some nurses came in to school with my palliative care CNS from Great Ormond Street Hospital, my mother and I joined them and we all had a meeting at my school with the woman who is in charge of pupil support who was constantly saying she had another meeting as if ours wasn't improtant enough. But luckily my palliative care nurse helped me when I got a little upset or couldn't get my words out properly.
We had organised the meeting as I felt really upset. I was constantly being asked why I had a medical pass and kept being told to hand out books and stopped when I was inside school.One teacher also assumed that I was lying and accused me of not even having a medical condition. It really hurt my feelings as I dont make things up. I know some teachers who are new may not know, but I always understand that so I let it go. If they have seen me before however, it upsets me. I think that teachers should talk TO us rather than AT us and listen to US.
We had the meeting; on the whole i think it went pretty well- I explained how I feel like no one listens to me or acknowledges what I am saying.I am asked a question and then when i try and reply they have lost interest and don't listen.
Even after saying this I still feel my head of year doesn't listen. I recently spoke to her and she kept over riding what I was saying.She didn't accept that I had a valid reason to get upset and instead told me that being sworn at by another person in my class was their way of putting up a wall against me.I thought swearing was unacceptable no matter what.
I don't understand why she is always trying to undermine me. I think we should all a speak in a civilised manner.Its not a competition. That is what my parents taught me anyways. I always feel like she is trying to push the fact that she is a teacher and I am nobody. I know she doesn't like me very much and always manages to make me feel alone.However during parents evening, I realised that all of my teachers do indeed like and care about me,they said some really nice things about me - It is pretty unfortunate that one or two think differently and feel that they have to dominate their presence.I just hope that any promises that were made during the meeting will be carried through. Watch this space.
Last Friday I went to Great Ormond Street Hospital for my consultation. During this, we agreed that the steroids seemed to be working and that for now, the lung transplant is on hold. The doctors are really happy with my progress. I am really happy with that as I was apprehensive of the idea of a lung transplant.
You will be glad to hear that I have also been doing mostly full days at school. I do get pretty exhausted in the afternoon when I come home and have a tendency to go to sleep for a couple of hours just to recuperate, but if it means a whole day at school then so be it.
I desperately want to do well at school.
My hospital trips weekly for platelets have been going pretty well and things have been running smoothly for the past few weeks.
Due to the problems at school unfortunately, I had to have oxygen for the whole night all nights this week even though i hadn't needed it for 3 weeks. I hope all will be well soon.
Have a wonderful weekend
Devaanshi x
I want to be the person you don't look at when I first enter the room.
I want to be the person you miss when I leave.
I am truly sorry for my lack of posts during the last week. I wasn't very well and then I was having a few problems at school.
So... a couple of weeks ago, some nurses came in to school with my palliative care CNS from Great Ormond Street Hospital, my mother and I joined them and we all had a meeting at my school with the woman who is in charge of pupil support who was constantly saying she had another meeting as if ours wasn't improtant enough. But luckily my palliative care nurse helped me when I got a little upset or couldn't get my words out properly.
We had organised the meeting as I felt really upset. I was constantly being asked why I had a medical pass and kept being told to hand out books and stopped when I was inside school.One teacher also assumed that I was lying and accused me of not even having a medical condition. It really hurt my feelings as I dont make things up. I know some teachers who are new may not know, but I always understand that so I let it go. If they have seen me before however, it upsets me. I think that teachers should talk TO us rather than AT us and listen to US.
We had the meeting; on the whole i think it went pretty well- I explained how I feel like no one listens to me or acknowledges what I am saying.I am asked a question and then when i try and reply they have lost interest and don't listen.
Even after saying this I still feel my head of year doesn't listen. I recently spoke to her and she kept over riding what I was saying.She didn't accept that I had a valid reason to get upset and instead told me that being sworn at by another person in my class was their way of putting up a wall against me.I thought swearing was unacceptable no matter what.
I don't understand why she is always trying to undermine me. I think we should all a speak in a civilised manner.Its not a competition. That is what my parents taught me anyways. I always feel like she is trying to push the fact that she is a teacher and I am nobody. I know she doesn't like me very much and always manages to make me feel alone.However during parents evening, I realised that all of my teachers do indeed like and care about me,they said some really nice things about me - It is pretty unfortunate that one or two think differently and feel that they have to dominate their presence.I just hope that any promises that were made during the meeting will be carried through. Watch this space.
Last Friday I went to Great Ormond Street Hospital for my consultation. During this, we agreed that the steroids seemed to be working and that for now, the lung transplant is on hold. The doctors are really happy with my progress. I am really happy with that as I was apprehensive of the idea of a lung transplant.
You will be glad to hear that I have also been doing mostly full days at school. I do get pretty exhausted in the afternoon when I come home and have a tendency to go to sleep for a couple of hours just to recuperate, but if it means a whole day at school then so be it.
I desperately want to do well at school.
My hospital trips weekly for platelets have been going pretty well and things have been running smoothly for the past few weeks.
Due to the problems at school unfortunately, I had to have oxygen for the whole night all nights this week even though i hadn't needed it for 3 weeks. I hope all will be well soon.
Have a wonderful weekend
Devaanshi x
I want to be the person you don't look at when I first enter the room.
I want to be the person you miss when I leave.
2 comments:
Glad to read your new post. We do follow it regularly and wondered if everything was alright. Keep well and hopefully some people at your school will see sense.
Thank you so much. You have no idea how much it means to me that you follow my blog. I made it for just this reason, so people could see how day to day life is for someone like me. I do try and update this blog as much as possible however sometimes, it is hard; especially if i am unwell or in hospital.
I wish you the very best
Devaanshi :D
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