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derby42

I need some reassurance please

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derby42

i just came across something on the mss website. Three young women posting about thier experiences looking after thier mums after many years with ms. Its terrified me to be honest. Ive just been in tears to hubby but he doesnt know what to say to me. These ladies were left unable to do anything at all. It sounds horrific and now all im thinking about is my poor children and what they might have to go through. Is this how im going to end up? Im sorry im in major panic mode right now.


derby x

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Bigbird

Don't panic.

We all have no idea how we'll end up. I started with MS 30years ago and am only now using crutches. Some of us don't even get there.

 

I know it's all too easy to think the worst but it may not happen.

Not sure if that is reassurance but you may never get there.

 

I know it's hard to be positive when you hear or read of something that portrays only bad things but all of us are different. It affects us all in different ways. Not fantastic and I'd rather not have this thing but you to struggle on for your kids and hubby. They love and need you

 

xx

:hearts_circle:

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Life's too short to be subtle

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fourdogs

Hi there , all I can say is that sometimes we can read too much , it is like looking at a medical book you can end up scaring yourself stupid .

With ms I think we have to take each day at a time and concentrate on coping with the days as they present themselves to us.

Regarding your children well you could stay the same for years and nothing more increase we just do not know so your kids could be grown up before you might need help from them. My mum had various things wrong with her , pernicious annemia for one , she had injections and was very off balance all her life ,ms can copy lack of b12 so like ms in the way of fatigue leg pains .

As kids growing up we got used to that was how mum was so it became a way of life ,our childhood was a happy one we knew mum was limited in what she could do , do not worry as to what might happen as stressing will make you worse.

My lads are grown up and I was dx with ms 2years ago they also got used to mum just having one of her moments so mine also managed ok

Take care try to calm down and just enjoy your beautiful children xx :console:

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Akorah

Hi fourdogs just thought id mention i also have pernicious aneamia as well as MS so i know how your mum felt! I have my b12 injections every 10 weeks and i definately know when its due!


chelly xxx

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Christina

:iagree: with Big Bird, it's easy to get very scared but actually those stories are at the extreme of MS disability. It's important to remember that. The vast majority of people don't become extremely disabled or even need permanent wheelchair, but it is true that some do. Most of us won't need that level of care but it's impossible to predict and everyone's experience is different. I'm sure that's not going to be very reassuring but no one can know what's around the corner so try not to dwell on what could be and try to live in the present. I guess that's how we all try and cope.

 

I'm sure most of us have thought about the future and been frightened, I know I have, but I try not to think about it too much as I can't change it and I don't want to live miserably waiting for something to happen, which may never. Finding a way to live in the present can save you a lot of anguish.

 

Chris x

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Not waiting for the storm to pass, but learning to dance in the rain ....

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Akorah
:bravo: Chris!

chelly xxx

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Nick

Being Frightened is normal Derby......... The trouble is that you can easily read a lot of stuff on the internet which is either incorrect or something that may not affect your own situation.

We are all frightened! The way to help here is that understanding your own problems and limitations properly will stop you from worrying about all the wrong things. that is those bits that may never affect you. The best thing is to stick to the MS Trust and MS Society information , Talk to your GP and specialists and work at reducing that fear!

Sometimes it can't be avoided and we all have bad days thinking about 'what if' But with good knowledge you can start to build up 'Attitude' A good defence against those horrible goblins!

On the forum here you have already found some people with a lot of the right Attitude! Its a real skill and you have to work at it bit by bit to gain a chunk! Don't try and do all this in one go! Just make sure you have some good bits in between the not so good bits.


Just another Warrior...........

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derby42

Is it really so uncommon though? I was so upset last night i was begging my hubby to do away with me if i got like that. I was so upset. The thought of iim and my kids watching me decline was just too much. He didnt know what to say to me. Then i thought that maybe i should do it myself before i got like that. I didnt think that happened these days. My family tend not to last into thier sixties anyway so im just praying that i dont get like that in the next 20 years. Doom and gloom at the moment.


derby x

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Nick

Derby,

I can tell you now that lots and lots of people live with MS most of their long lives without ever experiencing the worst aspects. Only last Friday I was talking to an elderly lady who has had MS since 1955!!!!! She is in her 80's and is very cheerful, gets on with things and has the best knowledge of anyone I know about how to cope with it! There is no need for all the doom and gloom. You just need to find the best way to understand things. That will take time but you have all these lovely people here to help with that. Thats amazing! That really is AMAZING!!!! Wow. They want to help because they know what it feels like!


Just another Warrior...........

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Christina

What can we tell you Derby? The figures suggest that 75% of people with MS don't end up in a permanent wheelchair, so about 25% do. Also life expectancy is normal or near normal. Drugs and new treatments are being researched all the time. We can't tell you that you won't be unlucky but the odds are on your side, same as for most of us. Looking at the rest of your life as a catastrophe waiting to happen and scaring yourself and your family won't do anyone any good. You have to wait and see how things go with your MS, there is much more on offer these days than years ago. Getting overly stressed and anxious won't be helping your recovery.

 

Chris x

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Not waiting for the storm to pass, but learning to dance in the rain ....

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kizzy

Oh hun i can understand you are scared i think we all are deep down but life is full of what if's that we have to learn to deal with. Do you know and it has been proven over and over again that people with positive attitudes tend to recover from illness and respond to treatment much better this is even the case in people who have cancer or surgery and i know this is so hard given the circumstances but sometimes you have to just fake it till it becomes habbit. You can only make yourself feel worse by getting upset over things. Think of all the positives hubby , children etc I know this sounds strange but i get through days thinking ok well not great but could have been worse and at least its me not my girls that are ill and feel very thankfull for that.I guess everybody has there own method of coping. Like has all ready been sugested try and stick to offical sites to when reading up. I hope you feel better about things soon ,

 

Big big hugs Tracy XXXXX :heartbeat::flowers2::heartraining::hugs2:

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angeltess

Hi Derby, Tracy has it spot on!!! I even told my 18 year old the other day that although this is an unsettling time for me, if it were happening to any of my 3 kids I couldn't deal with it. No-one knows what lies ahead, thank goodness. And as Chris says, there's no point stressing about what may never happen. I'm a fine one to talk, but I do try not to think too far ahead with it all. Jan. xx.


Broken wings can heal and mend again. Don't be afraid to cry your tears out loud. Everybody needs to have a friend. Wishbone Ash.

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happyandy

Hi Derby,

 

My lady friends neighbour has had it for 30 years and she has tingly fingers. Ive got more reason than most to worry ( see my profile ) but it just makes me want to get as much out of each day as I can.

 

The bottom line is that you would have to have rapidly progressing MS which you don't have to even be a candidate for what you are concerned about.

 

Speaking with the MS Society helpline people or a clinical psychologist would help you.

 

Id be more concerned about the risks of smoking. Cancer or heart disease is worse than MS.

 

Andy


If I knew I was going to live so long I would have taken better care of my body

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cazza

Derby,

What more can i add to what has already been said. I know you will just see "words" that don't seem to take it all away,that, sadly we cannot do, but with our support you can, and will, get there.

To worry edlessly about the unknown (i was told) can become a self fullfilling prophesy, and that you don't want. To end your life would solve your hurt and pain, but you would just transfer all that to your kids and husband and family. Do they deserve that hurt? I'm sure they would rather have you,faults and all, to be there and to love.

I am talking from first hand experience of this, and believe me, although a good idea at the time, WOW am i glad i am still here,still me,far from perfect,but still functioning.

Stay strong :bike: xxxxxxxxxxxxxxx

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*A Christmas Carole*

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vix

Don't believe everything you read, a lot of it is scare mungering xxx


vix.jpg

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Bigbird

Well said Vix

 

I often think the Internet should come with a health warning!

 

:cheerleader:


Life's too short to be subtle

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mackers758

Derby, what you have to consider is that things only really get posted onto the forums if something wrong or bad happens.

 

If you went to a car forum for example, you'll find that most of comments are negative (my radio doesn't work, heater stopped working kind of things). It's not very often that someone would post that the heater in their car works fine, just as it should.

 

It's a little like that on the medical forums, people write in that they have a blotchy red rash in their underpants (not talking from experience here) and ask what it could be.

You wouldn't expect to see a post from someone saying that their bits are fine and nice and fresh would you ?

I understand how you must feel, but light will break through and the people that love you will be there for you no matter what.

When I heard the "MS" for the first time I saw images of me sat in a wheelchair doing nothing. I'm still undiagnosed and I'm certain that I will see those images once again, if things turn out for the worse. But then I will settle down and remember everything I'm learning on this great forum. Not everything happens to everyone, people are different and effected in different ways.

The symptoms I'm having now, may or may not continue. But I know that I'm not automatically confined to a life of misery.

 

Steve

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derby42

just wanted to say thankyou for all your comments. I havent said much cos im still a bit freaked out but thankyou.


derby x

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LynnWilliams

I still would love to give you a hug, and be able to tell youeverything will be okay but I can't coz I live to far. Also with ms just don't know what's around the corner and live for each day xxxx

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Emmy

I don't know whether this is reassuring, but it works for me: anyone could become severely disabled at any time (from a sudden illness, from a traffic accident, from just falling badly, like a friend of mine). The difference for those of us with MS is that we have already experienced something "you don't expect to happen to you" happening, and that, plus the "public face" of MS (I really hate Leonard Cheshire Homes for their ad a few years ago) make it feel much more possible for us.... but that doesn't mean it is. And thanks to everyone for the cheering examples (like the lady with the tingly fingers). Emmy xx

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