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Sometimes I wish one of my sons could be in my body just for a day, then maybe…just maybe, he’d understand how I’m feeling!!

hiya

nobody understands whether they are family or not. i dont understand how you are feeling cos only you do cos we are all unique-just like everyone else

however i like to think that folk are more understanding on here cos may have similar issues.

i totally ‘get’ u wishing ur son to understand but dont believe for a second you would wish him to experience this living h*ll!

please dont think i am being flippant or not understanding what u r saying-i TOTALLY get it! i hope you feel better just getting that out-here is a safe place to do so cos we have all been/are there.

take care of you, ellie

Hi Vinnygirl

Sometimes, just sometimes, I feel exactly the same!

But then, most of the time, I’m glad they don’t know - I’m very independent and wouldn’t want them thinking “Mum can’t manage”. I sometimes think having to do things myself gives me a goal to aim for and a real sense of achievement when I accomplished it by myself. I’m absolutely dreading the time they have to help me.

But, in the meantime, a simple “well done mum” or “you’re doing great” would be appreciated.

Would it be different if they we had daughters???

Rest assured … we on this site all understand how you’re feeling … and, yeah, “you’re doing great!”

Emma x

Thanks, i just felt upset because i DO still do as much as i can. I don’t go round with a ‘woe is me’ attitude…and , no i wouldn’t wish any ill on any of my kids…but, sometimes this son in particular can say quite hurtful things…but in a jokey kind of way. The words still play on my mind though. “many a true word said in jest” as my lovely mum used to say. Xxx

me again…

what age is this son? i have 4 kids, current ages 12, 13, 18 and 21. teens/early 20’s cant think beyond themselves-thats ‘normal’.

my 21 yr old daughter hasnt a clue(and doesnt want to know) what its like living me-the other 3 do. i have carers now-8 hrs weekly but we all muck in as we can not cos i have ms but because thats what families do! i have no-one nearby (extended family but they dont come near) so we cope how we can-am u will/do too

Hi Vinnygirl, I agree with what’s being said on here, nobody but you understands what you are going through but we can emphasise. Emma it makes no difference if you have daughters, I have three of them but I don’t get a “well done mum” either. On the other hand they don’t treat me like an invalid either. I am just mum. One of my daughters did a cake break fundraiser the other week for ms, I think that was her way of showing support. Yeah! We are all doing great. Take care, Mags x

Hi Vinnygirl, I get what you mean! I’d like for each of my adult kids and partner to be able to step inside my body for an hour each and come back out a little more considerate, yes it maybe selfish but their behaviour is also and a little insight does no-one any harm.

Wish away I’ll join you!!

Pauline xx

Hi Vinnygirl, I have one of each and my son is deffinatley more considerate & helpul than my daughter, she burries her head in the sand when it comes to my MS having said that like Maggie56’s daughter she also held a cakebake to raise funds for the MSS but guess who did most of the work? Tiring day but worth it raised £402.65 :slight_smile: Like everyone has said no one will ever understand how we feel and thats the worst of this disease most symptoms are invisible dosent make it any easier living with them though. I know for me I feel like I’m trapped in a body I no longer know :frowning: Take care Sue xx

that’s the same for me Sue. I do feel trapped in a body i no longer know. Chocorange, my son is 25…so really should keep hurtful opinions to himself. I’m just glad that this forum exists and I’m able to write about how i feel inside. Thankyou all for taking time to comment, advise and for your understanding. I think a private word with my son is in order. Xxx

Hello,

This is only a ‘might’ but he may just be a bit scared about his own future. My young son who is only 8 has already said to me that he hopes he doesn’t get it.

I am not making excuses but some people find that jesting etc. helps with their own fears for their loved ones, you are his Mum and he will be very upset about what is happening to you even if he doesn’t show it. A little discussion to explain that you are hurt by what he says is a good idea but to also keep the lines of communication open, so you can both talk things through as and when things happen.

Sam x

Thanks Sam, that’s good advice. Yes, thinking about it, he is the kind of lad that holds his emotions inside. He’s always been the comedian in the family and I do love the bones of him, as i do all my children, but I will let him know that sometimes what he thinks is funny, isn’t and he needs to be aware of others’ feelings.

It’s difficult for them to understand. My son is 5 and worries permanently, he looks so worried most of the time. Then last week he told me to catch him, I just said ur funny and walked away back to what I was doing. He’s frustrated just now. And willows 1 she’s never known me different she just fits in it’s like she know mums Ill. Sometimes when they spill juice, make a mess for the sake of it it takes a deep breathe as it’s not their fault I’m not so able. For me it’s my parents I wish would feel for 24 hrs how I am. My mum is burying her head, it’s my dad I talk more about my ms too. Then just sitting this week mum turned out the blue and told me how proud she is of me. So maybe she gets it more than she lets on. I get texts making sure I’m in bed. But yeah friends etc have no ides how hard it is X

It’s difficult for them to understand. My son is 5 and worries permanently, he looks so worried most of the time. Then last week he told me to catch him, I just said ur funny and walked away back to what I was doing. He’s frustrated just now. And willows 1 she’s never known me different she just fits in it’s like she know mums Ill. Sometimes when they spill juice, make a mess for the sake of it it takes a deep breathe as it’s not their fault I’m not so able. For me it’s my parents I wish would feel for 24 hrs how I am. My mum is burying her head, it’s my dad I talk more about my ms too. Then just sitting this week mum turned out the blue and told me how proud she is of me. So maybe she gets it more than she lets on. I get texts making sure I’m in bed. But yeah friends etc have no ides how hard it is X