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Nick

Talking to others about your MS

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Nick

As some of you know,  I have been writing and talking about my MS since I was diagnosed in 2007.   One thing I was glad I did back then was tell people that I had MS.  This is probably not something anyone should suggest or recommend to others just diagnosed. For myself, it turned out to be a good decision.  It's a strange thing, when you tell most people they simply don't understand, this is because they probably don't understand MS, or confuse it with something else.  I still have trouble with my siblings who, too this day, still can't quite grasp the way I am.

So you might think, why tell people? There are dangers attached, but while some may misinterpret , others will take the trouble to learn. One of the dangers is, what I call the 'sympathy card'  Like a get out of jail card, it could make you more susceptible to allowing others to make too much allowance for you.  That seems anti-intuitive but believe me you need to be fighting the right battle, the fact is when you first get diagnosed, you too don't really understand much yourself.

You, your friends and family, need to learn together. Doing all that single handed makes things much more difficult. Thats why I am glad I told everyone. 

Another hot day here, but I live close to the beach where we at least get a cool breeze, the water temperature of the north sea, close to the beach is getting close to 20 deg!  Should I risk a swim? Its been at least 30 years since I did that! 

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Tired
Happymama

Did you have that swim?  

 

I told a nurse friend about my symptoms and she immediately started telling me about a nurse friend of hers that has MS and how she has to get around some things.  She's the only person who has taken me seriously.  

 

I told my kids but as they see me going about living like a 'normal' person they don't have a lot of sympathy.  They still get fed, and don't care much beyond that.  I suppose a proper Dx might help.  Getting electric shocks and losing shins for hours on end so I need a stick just seem odd.  

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Skippysprite

Hi Nick

 

Although I have been diagnosed for many years now, when it first happened I was the opposite of you.  I kept it to myself, don't know why really, perhaps I thought if I didn't talk about it, then it wasn't real.  Anyway, my good intentions didn't last very long, it soon became obvious that I had a problem, and bit by bit I came clean and started talking about having ppms.

Hope you enjoyed your swim if you decided to go.

 

Pam x

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Nick

Sorry to disappoint you all, but I backed out of my North Sea dip, prudence won the day, how life has changed from my youth!  As kids we used to swim off the North Norfolk coast late in the year...........September/October time !  The air temperature is cool but the sea is still around 16/18 Deg, so it feels great and all the late holiday makers think you are mad!  By the way all the beaches along our coast are dangerous due to the fast rate of the tide, this can set you away from the beach faster than you can swim.  As kids we knew about this and were very careful to keep to places we knew and never to swim out of our depth. No lifeguards in those days. 

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Thinking
WobblyGreg

I was more like Skippysprite at first, 

After the initial double vision had gone I remember walking into town with the wife and saying well if M&S doesn't get any worse I can  handle this. 

 

I was signed off work (then long story ) i went on long term slick .

 

My family are the least sympathetic of anyone I know my kids just groan if I mention anything remotely to do with disability , when I  stumble or fall they just laugh when  i moan in pain they just shake heads .

 

Lately I have noticed if I'm asked what's wrong with me everyone seem to know someone with ms which they didn't when first diagnosed. 

 

One thing does annoy me apart from the obvious oh you look alright 🤔

Is oh my (insert family member freind etc) died of ms! not happened loads but enough to times to drive me mad lol

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Nick

My favourite self inflicted misunderstanding on MS was a number of years prior to my own diagnosis I was working with a trainee who informed me his mother suffered from MS.  I misunderstood, being ignorant on what MS was and cheerful said, ' My Sister had that, but she's fine now' , My Sister in fact had suffered from what is know as ME, something completely different!  Oh Boy, if there was ever a god out there, she sure knew how to strike back! 

My immediate family now have a good understand of my condition, BUT others not quite as close, still have no comprehension of what it means to be limited by the way that MS affects on my life. 

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Thinking
WobblyGreg

Reading that about your sister Nick reminds me way back in eighties in my very early twenties I went to Dr an d he said I think you have ( yuppie flu or) ME , for whatever reason there was no follow up , I just got better eventually went travelling .

I think that was probably a relapse 

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Cheerful
Gosport Nancy

When my son was about 7, our Avon lady happened to mention in his hearing that she had M.S. and when he asked her what that was she said 'Muscular Silliness' . I now use that as my explanation for those who know how to use Google but would rather have me explain :)

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popsie

I remember that when I was doing peer support one lady told me that her doctor told her to tell everyone.  So she did including her best friend with whom she had had a daily phone conversation for the last 30 years.  Well, the best friend never spoke to her again.  NEVER NOT ONCE.  The poor lady was devastated.  I made 6 calls to her, spanning 6 weeks, and all she ever wanted to talk about was this incident.  I did not tell anyone for 7 years until my children had finished school.  When I told my husband I said " You can leave now and find a young wife with good legs" he replied "Why would I, I have had a very happy life'.  He is still with me, a wonderful support and compassionate carer.

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