Feeling useless

New diagnosis and before diagnosis
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I’m in limboland as I heard it called on here. Have neuro appointment on 19th but gave reached rock bottom, had wired symptoms since October mainly in legs, Sunday nights my arms went heavy, I struggled to lift them, my Dr has given new medication to try and help, as a result have been laid up all week while stabilising on them.

i have three kids 15,14,7 and I am useless, can’t take them out can’t stand safely (without being dizzy) to cook, can’t walk to take my youngest to school…

my 14 and 7 year have really helped way beyond what is needed, but my 15 yeAr old has repeated said I’m lazy and need to sort myself out, I’ve tried to explain how drained I am, (sleep most of the day) and how the pain levels are reducing, but the instability is still there to no joy,

can anyone help me to find the words to explain to my 15 year old what’s happening…I gave had two Drs now saying it’s possibly Ms, as I have numerous tests which seem to rule out a lot of other suspect issues. I know it’s not confirmed until results if mri, and lp, but I could do with some help here.

it breaks my heart hearing my son say this to me, but I also understand his frustration as I’m usually a hectic mum, who us very hands on to everything, any suggestions please

feeling very down x

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Hi Heidi,

I’ll come clean and say right up-front that I don’t have kids, but I think 15 is old enough to hear a few home truths. He’s not a kid - he’s almost a man. It’s out of order to be repeatedly calling his mother lazy, under her own roof, while she’s being investigated for a serious illness. I don’t think he needs it “explaining” - he’s not a baby.

I know you don’t want to scare him with something that’s still unconfirmed, but he needs to be told that unfortunately, this isn’t a cold or something that you can just shrug off, and that you ALL need to pull together while you’re ill and waiting for answers.

Giving him the benefit of the doubt, it might just be easier to blame it on “laziness” than to accept the fact you might have a serious illness. But I still don’t think you should have to put up with a 15-year-old making you feel “useless” in your own home. He’s old enough to start being part of the solution, not part of the problem - as the younger two have already demonstrated.

I don’t think you should have to justify or explain not feeling well, as that makes it sound like his accusations are valid, and he’s forcing you into having to make excuses. He needs to understand that nobody’s happy about it - least of all you - but sometimes shit happens, and we have to stop moaning and try to make the best of it.

Sorry if this sounds harsh, but a 15-year-old can’t be allowed to rule the roost and accuse a sick parent of laziness. It’s not on.

Just the way I feel about it. Is there an adult friend or relative he has a good rapport with, who could have a word, so it’s not just you versus him?

Tina

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It’s always been just me and the kids, I have no support network outside, I have an older son who has left home and I am hoping to speak to him about having a word,

he has a fractured ankle atm, and last week I was taking to and from school, even though I achieved nothing else as exhausted, but I started to experience occasional numbness in my left arm, which I made a mental note, we both had hospital appointments last week, his on Wednesday for full plaster mine on Thursday for pelvis scan ( another test to tick of) on Friday I was dragging my leg and couldn’t place my heal in the floor, and couldnt do anything through pain in legs, heel of foot and exhaustion, both my arms went heavy on Sunday which scared me to have both arms and legs bad, so the taking him to school on Monday was out of the question, I don’t think he see me as ill, I had my own business last year painting and decorating and plastering and I lead a very hectic lifestyle, and we did everything together. He’s not used to seeing me like this.

i was fuming at him this evening and said I won’t accept being spoken to like this amongst other choice words, he knows he’s wrong for what he said, but I do feel he using this as a cry for help. I am all my kids have, my 15 year old bottles things up and unfortunately it’s not till he explodes does his true feeling come out, (death of my mum and dad, and death of auntie) showed this, I just don’t know how I feel about the possibility of having Ms, let alone trying to unravel what my son may be feeling?

Unfortunately this is effecting not just me.

how do I approach him to discuss things that I can’t answer?

i think he hates seeing me like this and the only way he can say he’s scared or worried, is to get me to get up and be normal?

does that make sense, I’m not defending him in everything, because it is disgusting saying that to me, but I feel I need to somehow explain what maybe (limboland) happening but don’t know how when I can’t explain it to myself either?

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P.s I meant in first post 3 kids at home, one who has left home

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Hi Heidi, I have 6 children one of them a 15 year old son. Funnily enough while I was waiting for my diagnosis and in the early days of receiving it he was the one I worried about the most. He seemed almost indifferent to what I was going through or at other times angry with me for being sick. I found this incredibly hurtful as we were very close.

to cut a long story short it came to a head one night and he broke down, it turns out that he was frightened of what was going to happen to me, and yes he was angry but not with me, with life for making his mother I’ll. 15 is a funny age for boys, not quite grown up and some parts of them very immature. Also the are old enough to go on the Internet and source information and as we all know some of it makes bleak reading.

try and tell him you are still his mum and available to him, but that you are sick, frightened and need his support. Maybe some counselling would benifit him.

dont despair just give him time and keep the lines of communication open.

ann x

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Thank you ann, I do believe this is the case, he is just as confused and frustrated as me.

he won’t talk atm, everything is “I don’t care” which is his guard being in place as I think he isn’t ready to acknowledge it yet, honestly neither am I, and until it get confirmed I am still hoping, even if my body don’t let me forget the maybe’s.

i am going to try and speak to his teachers to arrange some additional support, as he, as all my kids have been through a lot with deaths in the family. And this is exactly how he used to act, angry and guarded, I hope they can help, I can only say what I know which is a lot of maybe’s as no one knows what the further holds, even with a diagnoses, everything is uncertain x

when you said your boy broke down in tears, that my what has happened with my son in the past, and until he breaks he don’t realise his feelings, I will be there for when he finally breaks, I think I just needed to let of some steam, and advice from others who have been in this limboland.

thank you it means a lot, x

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Heidi the additional supports in school sounds like a great idea. Just a thought but could he be worried that you are going to die, he has had to deal with 3 bereavements at a very young age which is very tough, maybe you have a frightened boy who is afraid he is going to lose his mother? It might be worth reassuring him that this is not the case.

ann x

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Hi Heidi,

For what it’s worth, I think Agenda has it spot on. He is scared, anxious, frightened and angry and with all the usual ceavats that go with being 15, he does not know how to express this.

When my problems started becoming impossible to ignore and affecting daily life, my son, who is 19, seemed almost indifferent until we had the breakthrough breakdown and he admitted that he was scared, hadn’t wanted to admit it was happening etc. Like you, it has always just been me and him and we are very close.

The sheer uncertaintity and unpredicablility of limboland and of MS itself once confirmed is enough to frighten the toughest of us, let alone a 15yo boy, still learning to deal with his own emotions, let alone what is going to happen to his mum.

I think the only thing you can do at the moment, is be honest with him, tell him that no-one can tell what the future holds, that you are still his mum and always will be, it hasn’t changed you as a person and try not to take his lashing out personally. I am quite, quite sure he doesn’t mean it, but knows no other way to express his fears. You sound like a fantastic mum, all we can do is the best with what we have.

Best wishes

Sally x

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Thank you everyone for your reassurance and kind words, I think you are right, as I have said its his way of dealing with things, I’m just waiting for the sign of him dropping his guard so I can wrap my arms around him and allow his emotions to be released. He’s shut of atm, so keeping an eye on him,

He is my world along with my other children x I know he’s scared, confused, and uncertain of what the future may hold. School have been brilliant and are going to bbm offer him support when needed and chill time to allow him time out if he becomes frustrated x

Many many thanks. It’s nice to express things with people who understand x