Dealing with chronic pain
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13 Year old needs help for mother

amira768amira768 Member Posts: 26 Connected
Hi everyone, hope all is well.

My name is Amira, I am from The Netherlands. I am 13 years old, becoming 14 in March. My mom has been dealing with chronic back pain for about 3/4 years now. I really need help. If anyone recognizes the symptoms im about to describe, please reply.

She has upper back pain, the level of pain depends on the day. But, the days where she feels "good" are rare. In 4 years I think ive only seen 2 days where her pain was very little.

The amount of pain also changes during the day, she could feel bad in the morning but then the pain could lessen in the afternoon and then become worse again in the evening. She sometimes feels a lot of pain on the right side of her back, and the other day the left side could hurt way more. Sometimes she even does not have any pain on one side of her back, but then the same side could be killing her the next day. So her pain is kinda irregular.

 She has tried all kinds of pain medications and therapies, but nothing worked so far. Please tell me if I need to provide more info. If anyone has some (general) suggestions as to what to do, please tell me. And if anyone recognizes these symptoms please tell me as well. Thank you.

Replies

  • kami24kami24 Member Posts: 402 Pioneering
    It could be sciatica or arthritis even as my dad has it chronic when he was about 38 although it was due to his physical job he did but he did get over it seeing a psysiotherapist so I definitely recommend that and you can get funding for this on the nhs or through the doctors surgery you belong to. This is the nhs guide on back pain https://www.nhs.uk/conditions/back-pain/
    And they may have more details and help lines on there. If you are suffering mentally because of this then there are always people that can support you and your family -
    https://m.facebook.com/profile.php?id=100028264426995&ref=content_filter

    And the mind website have useful helplines and info
  • kami24kami24 Member Posts: 402 Pioneering
    edited January 31
    <moderator removed - medical advice not allowed>
  • kami24kami24 Member Posts: 402 Pioneering
    edited January 31
    <moderator removed - medical advice not allowed>
  • kami24kami24 Member Posts: 402 Pioneering
    edited January 31
    <moderator removed - medical advice not allowed>
  • lisathomas50lisathomas50 Posts: 4,338 Disability Gamechanger
    You should realy get in touch with a doctor as we aren't medical professionals  and we shouldn't be telling you whst medication your mum should take in case of allergic reaction not really  knowing what is wrong and what other medication she is on 

  • lisathomas50lisathomas50 Posts: 4,338 Disability Gamechanger
    @chiarieds could you help please 
  • leeCalleeCal Member Posts: 3,690 Disability Gamechanger
    edited January 30

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  • lisathomas50lisathomas50 Posts: 4,338 Disability Gamechanger
    @leeCal thank you I have flagged the post 
  • chiariedschiarieds Community Co-Production Group Posts: 9,160 Disability Gamechanger
    edited January 30
    Hi @amira768 - welcome to the community, & thank you for joining. You are an amazing young person reaching out to help your Mom. As has been mentioned above, we cannot diagnose, nor suggest medication, as we are not doctors. Your Mom's doctors are in the best position to help her, as they know her medical history, and what might help.
    There are some things that might help; in the UK we have pain clinics, that help people who have pain every day. Do you have something similar in the Netherlands? Sometimes other things help like listening to music, watching a good film, reading, drawing....anything your Mom likes that might take her mind off the pain.
    Everyone here is very kind and friendly, and you are so very welcome to come and talk to us any time. It would be lovely to hear about you, as well as how much you are trying to help your Mom.
    I am sorry that one person above was sending you inappropriate information. Everyone else would like to help and support you as much as we can. Hoping to hear from you again, with my best wishes to you and your Mom. :)
  • lisathomas50lisathomas50 Posts: 4,338 Disability Gamechanger
    @chiarieds sorry I was worried thats why I tagged you  
  • chiariedschiarieds Community Co-Production Group Posts: 9,160 Disability Gamechanger
    edited January 30
    No problem @lisathomas50 - I was doing a somewhat lengthy reply on another post, so didn't see your tag for a little while. Just hoping we hear from this lovely young person again, & she hasn't been put off by kami's posts. You did the right thing in flagging it.
  • amira768amira768 Member Posts: 26 Connected
    chiarieds said:
    Hi @amira768 - welcome to the community, & thank you for joining. You are an amazing young person reaching out to help your Mom. As has been mentioned above, we cannot diagnose, nor suggest medication, as we are not doctors. Your Mom's doctors are in the best position to help her, as they know her medical history, and what might help.
    There are some things that might help; in the UK we have pain clinics, that help people who have pain every day. Do you have something similar in the Netherlands? Sometimes other things help like listening to music, watching a good film, reading, drawing....anything your Mom likes that might take her mind off the pain.
    Everyone here is very kind and friendly, and you are so very welcome to come and talk to us any time. It would be lovely to hear about you, as well as how much you are trying to help your Mom.
    I am sorry that one person above was sending you inappropriate information. Everyone else would like to help and support you as much as we can. Hoping to hear from you again, with my best wishes to you and your Mom. :)
    I dont really understand what happened. Thank you for your support tho. Do I need to take down the post? Im worried that I said something wrong. Please tell me if I need to take the post down.
  • amira768amira768 Member Posts: 26 Connected
    You should realy get in touch with a doctor as we aren't medical professionals  and we shouldn't be telling you whst medication your mum should take in case of allergic reaction not really  knowing what is wrong and what other medication she is on 

    I understand. Thank you. I wasnt really looking for medication advice, but rather searching for someone that recognizes these symptoms and has any idea what this could be. Since doctors dont do anything, I thought I could just ask for help online. But I now see why it is wrong, thanks.
  • leeCalleeCal Member Posts: 3,690 Disability Gamechanger
    Don’t worry @amira768 you didn’t do anything wrong at all, we’re just not supposed to give medical advice, but you didn’t ask for medical advice so it’s okay. 🙂
  • lisathomas50lisathomas50 Posts: 4,338 Disability Gamechanger
    @amira768 don't worry  just don't follow the medication advice as @chiarieds said we are friendly people  do you look after your mum  it must be difficult to see your mum suffering  we wouldn't know whst is wrong with your mum but she needs medical help  if she is in so much pain 

    Is there just you and your mum  do you have any brothers or sisters  is your dad with you aswel 

    Are you ok  @chiarieds maybe be able to help a bit more don't worry 
  • chiariedschiarieds Community Co-Production Group Posts: 9,160 Disability Gamechanger
    Hi again @amira768 - as @leeCal said we cannot give medical advice which kamir unfortunately gave, and may not help your Mom as she does not know your Mom's medical history like her doctors will do. You did not do a thing wrong, honestly. You looking for help is certainly not wrong, but even if someone feels they know the symptoms your Mom has, we cannot say, as we cannot know for sure. I hope you understand.
    You certainly can ask for help, but we just cannot give medical advice, or guess the problems your Mom has, I am sorry, and you certainly did nothing wrong, and do not need to take your post down, it was another that unfortunately did actually say a 'wrong thing.'
    I hope you are OK too. We may be able to help, just not with medical advice, but there are other things that others like myself find helpful in dealing with daily pain, when medication does not help, or only helps 'just' a little. :)
  • lisathomas50lisathomas50 Posts: 4,338 Disability Gamechanger
    @chiarieds it must be a worry  being so young worrying about your mum 
  • amira768amira768 Member Posts: 26 Connected
    @amira768 don't worry  just don't follow the medication advice as @chiarieds said we are friendly people  do you look after your mum  it must be difficult to see your mum suffering  we wouldn't know whst is wrong with your mum but she needs medical help  if she is in so much pain 

    Is there just you and your mum  do you have any brothers or sisters  is your dad with you aswel 

    Are you ok  @chiarieds maybe be able to help a bit more don't worry 
    Its just me, my mom and little brother. He is a gaming addict and is the reason for her stress. And yeah my mum really needs medical help, doctors are just so useless..
  • amira768amira768 Member Posts: 26 Connected
    @chiarieds it must be a worry  being so young worrying about your mum 
    Yeah, it really sucks. But what can I do.
  • amira768amira768 Member Posts: 26 Connected
    chiarieds said:
    Hi again @amira768 - as @leeCal said we cannot give medical advice which kamir unfortunately gave, and may not help your Mom as she does not know your Mom's medical history like her doctors will do. You did not do a thing wrong, honestly. You looking for help is certainly not wrong, but even if someone feels they know the symptoms your Mom has, we cannot say, as we cannot know for sure. I hope you understand.
    You certainly can ask for help, but we just cannot give medical advice, or guess the problems your Mom has, I am sorry, and you certainly did nothing wrong, and do not need to take your post down, it was another that unfortunately did actually say a 'wrong thing.'
    I hope you are OK too. We may be able to help, just not with medical advice, but there are other things that others like myself find helpful in dealing with daily pain, when medication does not help, or only helps 'just' a little. :)
    Thank you for your lovely comment! Im doing fine I guess. I just have really bad days sometimes just like today, where my mom is feeling terrible and that takes a toll on me as well. Overall im doing alright. Im just existing. Thanks for the comment.
  • chiariedschiarieds Community Co-Production Group Posts: 9,160 Disability Gamechanger
    Oh @amira768 - I wish that things were better for you. You are doing more than fine. I hope that tomorrow is a better day for your Mom, then also you. So, what do you think you would like to do after school?
    It really is good to hear from such a lovely young person; you remind me of my son, who cares, and does still care for me an awful lot. You also need to care for yourself. Do you have anyone who listens about you, or supports you? Any friends who would understand, or teachers? It is a great burden for a young person to have alone, and you should not feel like you are just existing.
    Anyway, you can always talk here absolutely any time, & I hope to talk to you again soon. Goodnight. :)

  • lisathomas50lisathomas50 Posts: 4,338 Disability Gamechanger
    @amira768 hope your mum starts feeling better soon isnt there any help you can get  like we do in the UK  someone who can come in and help you likexa carer or something like that 
    Take care of yourself as well it must be hard for you 

    Take care 

    Have a good nights sleep  hope to hear from you soon 
  • Cher_ScopeCher_Scope Posts: 4,038

    Scope community team

    edited January 31
    Hello @amira768 and welcome to our community.  I can only reiterate what others have said in saying, your mum must be very proud to have a daughter like you.  

    Over here in the UK, we have lots of support for young carers, and there is a NHS webpage offering some general advice that you might find useful for managing your own emotions about the situation.  I would normally hyperlink however my computer isn't playing ball this morning (!), so here's the link - https://www.nhs.uk/conditions/social-care-and-support-guide/support-and-benefits-for-carers/help-for-young-carers/  While if you search for young carers support groups in the Netherlands you should find similar.  

    I would second other members comments that your mum's GP (doctor) or specialist should be a first point of call for advice about future treatment.  So I'd encourage your mum to not be too disheartened and keep updating them as to her pain levels, although I understand how demoralising chronic pain can be.  

    Thank you to everyone who pointed out medical advice isn't allowed on the community  <3  That is a precautionary step to avoid inadvertently giving people information that will hurt rather than help.  I've edited your posts above to reflect this @kami24 and I appreciate this is an easy mistake to make if you aren't familiar with our guidelines and are trying to help.

    How are you today @amira768?  I'd love to know more about where you live!  I attended at a summer school in Nijmegen 2 years ago and have fond memories of the place.  You are very lucky to live there :)
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  • amira768amira768 Member Posts: 26 Connected
    Hello @amira768 and welcome to our community.  I can only reiterate what others have said in saying, your mum must be very proud to have a daughter like you.  

    Over here in the UK, we have lots of support for young carers, and there is a NHS webpage offering some general advice that you might find useful for managing your own emotions about the situation.  I would normally hyperlink however my computer isn't playing ball this morning (!), so here's the link - https://www.nhs.uk/conditions/social-care-and-support-guide/support-and-benefits-for-carers/help-for-young-carers/  While if you search for young carers support groups in the Netherlands you should find similar.  

    I would second other members comments that your mum's GP (doctor) or specialist should be a first point of call for advice about future treatment.  So I'd encourage your mum to not be too disheartened and keep updating them as to her pain levels, although I understand how demoralising chronic pain can be.  

    Thank you to everyone who pointed out medical advice isn't allowed on the community  <3  That is a precautionary step to avoid inadvertently giving people information that will hurt rather than help.  I've edited your posts above to reflect this @kami24 and I appreciate this is an easy mistake to make if you aren't familiar with our guidelines and are trying to help.

    How are you today @amira768?  I'd love to know more about where you live!  I attended at a summer school in Nijmegen 2 years ago and have fond memories of the place.  You are very lucky to live there :)
    I think that there are also groups for young carers in the Netherlands. However, I cant really say that I am a caretaker. My mom is able to function on her own, so I jut help with normal daily tasks such as doing the dishes or taking the trash out. Nothing special. I am mainly busy with school, it is really hard especially with this whole corona thing.. Today im doing well, much better than yesterday actually. My mom is feeling better as well I think, or she is just getting better at hiding it lol. Thank you for asking. I live in Rotterdam, and I agree that im lucky to live here. Its such a nice place! Nijmegen is really nice as well, I heard from a lot of people that studied abroad here in NL that they enjoyed it, so it must be popular for people outside of NL. My school is a international school and we get 75% of our subjects taught in English. I was actually supposed to visit Bath this year, but it sadly got cancelled. I hope to visit it when corona calms down a bit. 
  • amira768amira768 Member Posts: 26 Connected
    @amira768 hope your mum starts feeling better soon isnt there any help you can get  like we do in the UK  someone who can come in and help you likexa carer or something like that 
    Take care of yourself as well it must be hard for you 

    Take care 

    Have a good nights sleep  hope to hear from you soon 
    Thank you for your comment. I think that because of corona no one is able to come help us. Lots of people are stuck in this situation. They need help but because of corona the medical care is limited, and its only for emergencies. I just hope that corona will go away soon so we can all pick up our normal daily lives. Hope you are doing well, and take care!
  • amira768amira768 Member Posts: 26 Connected
    chiarieds said:
    Oh @amira768 - I wish that things were better for you. You are doing more than fine. I hope that tomorrow is a better day for your Mom, then also you. So, what do you think you would like to do after school?
    It really is good to hear from such a lovely young person; you remind me of my son, who cares, and does still care for me an awful lot. You also need to care for yourself. Do you have anyone who listens about you, or supports you? Any friends who would understand, or teachers? It is a great burden for a young person to have alone, and you should not feel like you are just existing.
    Anyway, you can always talk here absolutely any time, & I hope to talk to you again soon. Goodnight. :)

    Thank you for your kind words. I have no idea what I want to do after school, im currently studying Mandarin and I hope to be able to do international business. Sadly, no one to talk to about this situation, thats why im here. My friends always reply with a simple "aw i hope she gets well soon!". I dont think they understand the intensity of this situation, but I dont blame them. And I have teachers I can talk to, but that is just uncomfortable lol so im not gonna do that. Thank you again.
  • lisathomas50lisathomas50 Posts: 4,338 Disability Gamechanger
    @amira768 I am ok how are you doing it isn't always easy talking to your teacher but maybe  they can help you or get help for you 

    Its hard to reach out but you need to try and get help before things get to hard for you and things start affecting you health aswel 
  • amira768amira768 Member Posts: 26 Connected
    @amira768 I am ok how are you doing it isn't always easy talking to your teacher but maybe  they can help you or get help for you 

    Its hard to reach out but you need to try and get help before things get to hard for you and things start affecting you health aswel 
    I think you are right. I have been getting more migraines lately, Ive had them since the age of 9. They seem to get worse, probably because of stress. I will try to talk to my teacher, but they are busy because of corona and this time is already very hard for them as well. I will try to send an email tho, just so I can talk to someone. Thank you very much.
  • lisathomas50lisathomas50 Posts: 4,338 Disability Gamechanger
    @amira768 its  alot for you to take on  and you need to take care of yourself as well 

    Are you and your little bother and your mum  are you eating properly  do you have food enough to last 

    I am glad that you are going to tell your teacher  someone that can physically help you is what you need 


  • amira768amira768 Member Posts: 26 Connected
    thank you for the kind comment, it means a lot to me. We are all eating properly thankfully, enough food as well and so far no money problems. I think talking to a teacher is the right choice, thank you for helping me!
  • lisathomas50lisathomas50 Posts: 4,338 Disability Gamechanger
    @amira768 your welcome is it night time where you are  if it is try and get some sleep 

    Speak to you soon 
  • amira768amira768 Member Posts: 26 Connected
    @amira768 your welcome is it night time where you are  if it is try and get some sleep 

    Speak to you soon 
    Yes its almost night time. I will be finishing some homework and then i will try to get some sleep. Thank you and have a good evening
  • chiariedschiarieds Community Co-Production Group Posts: 9,160 Disability Gamechanger
    Hi @amira768 - Wow, I'm impressed that you are studying Mandarin. If you want to pursue a career in international business, I think Mandarin Chinese is the second most widely spoken language after English, so a great thing to study. I studied Latin (as I hoped to become a doctor), but for some odd reason to take an exam early in Latin, I also had to study Greek. I didn't become a doctor, but rather a physiotherapist. I find that remembering just a little Latin, & even less Greek, does however help me to understand the meaning of some words in the English language! My English teacher was actually Welsh, & gave some lessons in this to those of us who were interested too!
    Only you can know if it would feel OK to talk to a teacher, but if you have one that you feel you can talk to that would be good. They are there to teach you, but need to know if you have any concerns, as they can help...an email sounds good. I think an adult who knows you would be a good person to contact, and don't worry about the Corona situation.... they are still there to help you.
    Thank you for your kind words too. Hope to speak to you soon, after you have kept up with your schoolwork. :)

  • lisathomas50lisathomas50 Posts: 4,338 Disability Gamechanger
    @amira768 its nearly 11pm here your such a lovely person hope your headache gets better soon 

    Take care 🙂 
  • amira768amira768 Member Posts: 26 Connected
    @amira768 its nearly 11pm here your such a lovely person hope your headache gets better soon 

    Take care 🙂 
    thank you so much. Im feeling better already!
  • amira768amira768 Member Posts: 26 Connected
    chiarieds said:
    Hi @amira768 - Wow, I'm impressed that you are studying Mandarin. If you want to pursue a career in international business, I think Mandarin Chinese is the second most widely spoken language after English, so a great thing to study. I studied Latin (as I hoped to become a doctor), but for some odd reason to take an exam early in Latin, I also had to study Greek. I didn't become a doctor, but rather a physiotherapist. I find that remembering just a little Latin, & even less Greek, does however help me to understand the meaning of some words in the English language! My English teacher was actually Welsh, & gave some lessons in this to those of us who were interested too!
    Only you can know if it would feel OK to talk to a teacher, but if you have one that you feel you can talk to that would be good. They are there to teach you, but need to know if you have any concerns, as they can help...an email sounds good. I think an adult who knows you would be a good person to contact, and don't worry about the Corona situation.... they are still there to help you.
    Thank you for your kind words too. Hope to speak to you soon, after you have kept up with your schoolwork. :)

    Yeah, that is the reason why im studying it. It is very hard tho, but I dont mind. I also heard that learning latin helps you find the meaning of English words, so that sounds really nice as well. My school teaches me 4 languages (exc. dutch and english) so im probably learning enough languages for now  :D  
  • chiariedschiarieds Community Co-Production Group Posts: 9,160 Disability Gamechanger
    You certainly are studying a lot of languages. I did imagine that Mandarin would be difficult.....much worse than Greek!
    What is your favourite subject(s)? Mine were English Literature & Geography, although I really liked Human Biology (but not so much learning about plant biology). Do you enjoy reading books to relax? It's the thing I like best.
    How are you and your Mom?
    Sorry for the late reply; I have had a lot to do today, and it's been busy here on the community. Hope to talk more soon.
  • amira768amira768 Member Posts: 26 Connected
    Ive been doing fine, thanks. How about you? 

    I went to my grandma so I can focus better on my studying. Its too hard at home. My favourite subjects are Chinese and English. Im best at languages and writing, maths not so. Everyone has their good and bad subjects I believe. 

    I dont really know how my mom is since im not at home and I dont want to ask. Sometimes it feels like I think too much about how my mom feels, and its good to have that feeling out of my life for a few days. I have an important maths test coming up so I am studying a lot for that right now, which is why im not as active here, sorry for that.
  • lisathomas50lisathomas50 Posts: 4,338 Disability Gamechanger
    @amira768 glad that things seem to be getting better for you andcthat your in a better  place now

    Your doing well in your studying and good luck with your  maths test 

    Take care 🙂 
  • chiariedschiarieds Community Co-Production Group Posts: 9,160 Disability Gamechanger
    Hi @amira768 - great to hear from you. Just a quick note, as I don't want to stop your studying. Maths was my weakest subject, so I sympathise. :(
    It's good that you're having a break away from home....a chance to recharge your batteries, & be able to concentrate on your studies, which are obviously important to you. Don't ever apologise if you have lots of studying to do that you can't come on here. You just do what you need to do, and when you have the chance, then you can talk on here. My best wishes too for your important Maths test....now back to your revision. :)
  • Carl_abcCarl_abc Member Posts: 11 Connected
    @amira768

    It's not often I comment on other people's posts, I usually just listen 👂

    However, I wanted to tell you that I think what you are doing is amazing, and I would be a very proud parent if my children turned out to be like you, you have wisdom beyond your years, and you are stronger than many adults I know.

    Although your mom may not always tell you, she will appreciate every single thing you do for your family - and I'm sure she'd struggle without you, you're the glue that keeps your family together, and don't let anyone tell you different.

    FYI - I'm 27 with 2 small children, suffering the same as your mom, and couldn't do it without my loving partner. It took me 7 years to get diagnosed with Fibromyalgia, Chronic Fatigue, Hypermobility, and I've received nothing other than painkillers and (pointless for me) Physiotherapy.

    It's daunting but your mom should keep on at her Doctor until she gets some answers, or at least some help to get through the day in pain, as I do.

    Keep your head up, and stay strong, you're an amazing daughter to your mom.
  • amira768amira768 Member Posts: 26 Connected
    Carl_abc said:
    @amira768

    It's not often I comment on other people's posts, I usually just listen 👂

    However, I wanted to tell you that I think what you are doing is amazing, and I would be a very proud parent if my children turned out to be like you, you have wisdom beyond your years, and you are stronger than many adults I know.

    Although your mom may not always tell you, she will appreciate every single thing you do for your family - and I'm sure she'd struggle without you, you're the glue that keeps your family together, and don't let anyone tell you different.

    FYI - I'm 27 with 2 small children, suffering the same as your mom, and couldn't do it without my loving partner. It took me 7 years to get diagnosed with Fibromyalgia, Chronic Fatigue, Hypermobility, and I've received nothing other than painkillers and (pointless for me) Physiotherapy.

    It's daunting but your mom should keep on at her Doctor until she gets some answers, or at least some help to get through the day in pain, as I do.

    Keep your head up, and stay strong, you're an amazing daughter to your mom.
    Hi there. Thank you so much, what a nice comment. You seem lovely. I appreciate it. It sucks reading your story, 7 years is a long time. If this whole thing has taught me anything it is that the medical world is not as reliable as it seems. Contrary to what I earlier thought, doctors aren't magical fairies with healing powers, I learned that the hard way. But there are also doctors that are simply lazy and don't look into cases further simply because they don't care, which leads to people being diagnosed so late. I think thats the case with my mom. There is a big flaw in the medical world, sadly. I hope you may be able to receive better treatment in the future, even though it may seem hopeless right now. Are you doing okay in these times? For a lot of people with chronic pain this pandemic sucks (including my mom, she hates it. All she wants is a vacation to finally see the sun again. The Netherlands can be pretty gray and boring). I hope that you, your partner and kids are doing well. Stay safe. <3
  • lisathomas50lisathomas50 Posts: 4,338 Disability Gamechanger
    @amira768 hi hows it going with you how did your test go in school that you said about  are you still with your nan or have you gone back with your mum 

    Hope your ok and doing well 

    Take care 🙂
  • amira768amira768 Member Posts: 26 Connected
    @amira768 hi hows it going with you how did your test go in school that you said about  are you still with your nan or have you gone back with your mum 

    Hope your ok and doing well 

    Take care 🙂
    Hi. Thank you for your message <3 I did the test, and it went great! I am now back with my mom, and im doing fine. How about you? Everything alright?
  • lisathomas50lisathomas50 Posts: 4,338 Disability Gamechanger
    @amira768 I am good thank you hope your doing OK hope your mum is feeling better 

    Glad that your test went well  
  • amira768amira768 Member Posts: 26 Connected
    @amira768 I am good thank you hope your doing OK hope your mum is feeling better 

    Glad that your test went well  
    thank you very much!
  • amira768amira768 Member Posts: 26 Connected
    edited March 20
    Today is a bad day again. I haven't told you all this, but I am living with a narcissistic little brother. Whenever my mom wants to feel good, he ruins it. He is holding my mom back from getting better. Today was a beautiful morning. I made breakfast for my mom, and the weather is great. 
    My mom felt good, she wanted to put on music and dance. My mom and I wanted to go to a park together. Now here's the thing, my little brother's phone is broken, so he uses my moms. My mom wanted her phone back to put on music and dance. All good, right? Nope. 
    My lil brother is spoiled, and he started screaming because he wanted the phone back. He had an anger blast. Morning ruined. Now, we tried searching for a phone, and we found one but he was so ungrateful, he said things like "buy the (Removed by moderator, profanity) phone" 
     and he was being overall ungrateful. When I wanted to buy the new phone for him, I asked for the laptop and he threw it at me. As if I am supposed to do things for him while he treats me and my mom like (Removed by moderator, profanity). He is so unbelievably spoiled, its crazy. Actually, if I was his mom, I wouldn't even have bought a new phone for him after screaming and being ungrateful. He needs to be disciplined. My mom is spoiling him, but its because she is too weak to deal with him. It's not her fault.  My whole day is ruined and I dont know what to do. 
  • amira768amira768 Member Posts: 26 Connected
    It was also my birthday the 14th of march, and I was sick so I didn't do anything. But my birthday is the least of my worries right now. Im just trying to get rid of the anger and frustration inside of me.
  • lisathomas50lisathomas50 Posts: 4,338 Disability Gamechanger
    @amira768 sorry your going through this you need to try and get some help it must be realy hard 
  • amira768amira768 Member Posts: 26 Connected
    @amira768 sorry your going through this you need to try and get some help it must be realy hard 
    Thank you for your comment. I am doing better now. I will try to get help
  • lisathomas50lisathomas50 Posts: 4,338 Disability Gamechanger
    @amira768 I hope you do its to much for you to deal with it on your own 
  • amira768amira768 Member Posts: 26 Connected
    @amira768 I hope you do its to much for you to deal with it on your own 
    yeah its hard, but im making progress
  • chiariedschiarieds Community Co-Production Group Posts: 9,160 Disability Gamechanger
    It's good to hear from you @amira768 - what progress have you made in getting support? How are you? Are you getting support for yourself, as you have had so much to deal with? Is your Mum doing any better, & is your brother still a pain? :)
  • lisathomas50lisathomas50 Posts: 4,338 Disability Gamechanger
    @amira768 glad to hear your makeing progress hope all your other problems with your brother have got better and that your mum is copeing better now 
  • amira768amira768 Member Posts: 26 Connected
    chiarieds said:
    It's good to hear from you @amira768 - what progress have you made in getting support? How are you? Are you getting support for yourself, as you have had so much to deal with? Is your Mum doing any better, & is your brother still a pain? :)
    I havent gotten any support from other people, id rather keep this to myself. But we have cleaned up the house and threw away/sold excess stuff such as clothing etc. this is a big step for my mom. She always wanted to do this, its been her dream. But she always was too sick to do it. So I helped her. Maybe im going to sell some stuff on my own as well so that I can earn some money, so I can go out with my friends this summer. I cant work because im just 14 years old. I dont want to ask my mom for money since she is too sick to work. I think my moms pain got worse, I dont really know. Im too afraid to ask. But ill try to keep my head up.

     My brother is a really kind but insecure guy. Our relationship improved and the more I look at him the more I see that he is just broken. He didnt do anything wrong and he didnt deserve this life. He didnt choose to be born with a syndrome. Ill be a bit kinder to him from now on. He really sees me as his big sister, his main influence. Ill try to set a positive example.

    School is really hard, there is another testweek coming up. I havent studied but ill pass the year anyway so I dont really care. 

    If this posts sounds a bit too depressing, dont worry. Today is just a bad day, it will pass like always. Schools are probably opening up again, so I think that when I see my friends again ill feel a bit better
  • amira768amira768 Member Posts: 26 Connected
    @amira768 glad to hear your makeing progress hope all your other problems with your brother have got better and that your mum is copeing better now 
    Thank you so so so much. Your support means the world to me
  • chiariedschiarieds Community Co-Production Group Posts: 9,160 Disability Gamechanger
    Hi @amira768 - it seems like you've made progress in significantly helping your Mum with sorting the house out. I can understand you wanting to keep things to yourself; I feel I would be the same. However, if you do need help, don't ever be wary or afraid of asking, or talk to your Grandma, as I'm sure she would listen.
    I'm sorry you feel perhaps your Mum's pain is worse, but can understand it's difficult to talk about such stuff, as you just have to keep on doing the best that you can do, which you are doing.
    I'm pleased you have a better understanding of your brother, & feel perhaps you've earned more respect from him. Is it OK to ask what syndrome he has?
    Please don't stop caring about your schoolwork, though I appreciate you may have let your studies slide as you were helping your family. I'm sure you will feel a lot better when you see your friends again.....this has been an awful year with the pandemic for everyone, but I think really bad for young people; I don't know how I would have coped.
  • amira768amira768 Member Posts: 26 Connected
    chiarieds said:
    Hi @amira768 - it seems like you've made progress in significantly helping your Mum with sorting the house out. I can understand you wanting to keep things to yourself; I feel I would be the same. However, if you do need help, don't ever be wary or afraid of asking, or talk to your Grandma, as I'm sure she would listen.
    I'm sorry you feel perhaps your Mum's pain is worse, but can understand it's difficult to talk about such stuff, as you just have to keep on doing the best that you can do, which you are doing.
    I'm pleased you have a better understanding of your brother, & feel perhaps you've earned more respect from him. Is it OK to ask what syndrome he has?
    Please don't stop caring about your schoolwork, though I appreciate you may have let your studies slide as you were helping your family. I'm sure you will feel a lot better when you see your friends again.....this has been an awful year with the pandemic for everyone, but I think really bad for young people; I don't know how I would have coped.
    I actually dont know what syndrome he has, I dont know the name. Long name, very rare. But when I looked up his syndrome I saw really bad cases, but his case isnt that bad thankfully. He is perfectly healthy, just really bad eyesight and bad hearing. He also looks a little bit different from others.
    I dont think that I want to talk to someone about this. I dont like talking about my feelings to friends. It comes off as attention seeking and I dont see the point in doing it. I dont like affection like my other friends do. I dont like to be comforted when im crying, id rather just be left alone. I absolutely hate attention. But im actually a very social person! I can have great conversations with strangers, and I like doing it too. Im not shy at all, more introverted.

    I am just really not a affectionate person. I never told my friends or family that I love them, only when im in the mood for it. I dont like compliments either. I dont see the point in telling anyone in real life how I feel. There is no way they could possibly help me. Online is anonymous so I kinda like this. 

    I am a really cold looking person, everyone always calls me bitchy and rude. Maybe because I dont show affection a lot. Dont worry, I am not a narcissist. I actually have a heart, I really care about my mom and brother. (Mentally) disabled people are my weak spot, too. I want to cry whenever I see someone like that because i feel so bad for them and I recognize their situation all too well. I hope that I can work with troubled and disabled children in the future. I really want to help them.

    I find it so frustrating that even though I tried opening up to my friends several times, they still never take my matters seriously. And then they start talking about themselves again.
    I find it frustrating that they cant recognize my emotions, they always mistake my emotions for being rude and cold. I already created this reputation for myself. Which is why I want to look for other friends, outside of school. But I dont know where I can find those. Maybe ill join some online communities. 

    Ill try to not let school down too. Its important.
    As you said everyone is hopeless and this year sucks. Lets just hope that this storm will pass eventually.
  • Ross_ScopeRoss_Scope Posts: 4,131

    Scope community team

    Hello @amira768

    Thanks for the update and I'm glad to hear you're making progress. 

    Working with disabled children is a great aspiration to have and I'm sure you'll be able to achieve that one day. Your friends don't seem like the most understanding bunch at this moment in time, you're always welcome to post on this community if you ever need to ask anything, and our inbox is always open at [email protected] if you want a chat.

    You don't seem like a rude person at all to me, you've been nothing but lovely on this community and I have nothing but admiration for what you are doing, and how you are handling what you're going through.
    Online Community Coordinator

    Talk to our chatbot and give us feedback on the community.
  • amira768amira768 Member Posts: 26 Connected
    Hello @amira768

    Thanks for the update and I'm glad to hear you're making progress. 

    Working with disabled children is a great aspiration to have and I'm sure you'll be able to achieve that one day. Your friends don't seem like the most understanding bunch at this moment in time, you're always welcome to post on this community if you ever need to ask anything, and our inbox is always open at [email protected] if you want a chat.

    You don't seem like a rude person at all to me, you've been nothing but lovely on this community and I have nothing but admiration for what you are doing, and how you are handling what you're going through.
    thank you very much. I think ill stay on this community for a while
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