Last reply 8 years ago
parents with MS

I had to adjust fast to my dad having MS as I was told only when it couldn’t be hidden. I can’t talk to friends because they don’t understand and my brothers don’t talk about it so I have never addressed my feelings towards it. Is there anyone else in a similar situation? I have yet to meet anyone

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fab
8 years ago

hi! my situation is similar as i have a sister with MS as well as me. She is in a bed like a vegetable for many years as she gave up. My parents and friends who know my sisters situation believe that i will end up like that. they want to talk about MS with me but they dont understand what the disease can do and how you can take control of it to have a good life. i just want the support from family and friends but i am getting sorrow from them. i decided to get away from them and carry on with my life. I love my life and im not going to give up. i have learned that im the owner of my life and no one will influence me. you build your on own life and peoples problems are not your problems. try to be a bit selfish and think about yourself. at the end of the day there are people out there with problems like yours or worse and now you can get to chat with people online who really understand you. dont feel lonely, and support your dad without getting involved in his problems.
it is hard for you specially if you see them often, maybe carry on with your life and goals. I live in different country from parents and friends, that makes easier to push them aside.


tothemoon
8 years ago

Thanks for the advice. I live at home still since I am a student so I can’t get away from it. I think what makes it hard for me to talk about it with my brothers is that they have stayed supportive but removed. I wasn’t given that option. Almost the day after I was told I had to drive him to appointments and help with medications while my mom was at work. He was diagnosed 20 years ago, the year I was born but my brothers and I weren’t told until 2 or 3 years ago so it was very sudden. Maybe it would have been better if we had known all along and grew up knowing about MS, but I understand why he didn’t want to tell us. It is just tough because you have an image of what someone is to you, then suddenly that has been altered and plans have to be adjusted. Maybe I do need to take some time apart and address and accept that this is how things are now instead of just going with it without thinking.


fab
8 years ago

Tothemoon,
it was not ideal for all of you to know about his MS so late. Now it is time for you correct the situation, it is a good idea to get away for some time and accept.
Instead of you being like a nurse or assistent, look for things that might help your dad to get his freedom. There are plenty of things available out there… you have your life and it is not good to dedicate it to your dad and family. Im sure that he will understand… maybe it will be good idea to mention this to the GP to get some consulling and also for your brothers. the NHS have also pastient transportation if needed. in my case, i have to go to the hospital for my treatment and there is free patient transportation from/to my house to/from the hospital.


ghada
8 years ago

So, from the child’s perspective, you think its better to have known about this at an earlier age? just interesting to note as some mught think hidding it was a better alternative – clearly not always. x


fab
8 years ago

well, from the child’s view point it might not make any sence


fab
8 years ago

well, from the child’s view point it might not make any sence “MS” but after some years they get used to it and it wouldnt be that shocking. Anyway, we need to try to overcome these issues, understanding that our parents have done things for our benefit irrespective of being right or wrong


tothemoon
8 years ago

I’m actually torn as to whether I would have been better off always knowing or not finding out until things couldn’t be hidden.
On the one hand, knowing at an early age could have caused me to yes accept it, but also look for signs of progression in every little thing and causing unnecessary worry
I was shocked when I was told, but I understood why I wasn’t and I’m partly glad he waited. It allowed me to have tons of childhood memories without them being tainted in any way.
At the same time, now I look back on things and realise things as a kid that I thought were nice moments between us or fun quirks of his, were actually the MS but I didn’t know.
I think both ways have its pros and cons and it would depend on the person if they would have rather known


queenfeg
8 years ago

Hi i’m a parent to two, 17 and 9, they have both known from day one as i was unable to hide it from them, the little one just worries all the time about me which i feel is unfair the older one is my carer again unfair. i wish i could have hidden it from them then they could have a “normal” childhood.At the same time i’m glad they do know as when i do have relapses they know i’ll be ok eventually. it’s a hard one tell or not what ever works for your family mine was tell. x x

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