How to make them understand :0(

[kizzy]

Evening all, I

[Stumbler]

Kizzy,

 

MS is not a singular condition, it affects you primarily, but also affects your close family.

 

You're all on a learning curve to understand what MS is and what it means.

 

The MS Trust produce a set of publications covering all aspects of MS, the symptoms and the treatments.

 

This publication might be a useful starting point for your Mother:-

 

http://www.mstrust.org.uk/downloads/ms_explained.pdf

 

The full list of publications is here :-

 

http://www.mstrust.org.uk/shop/products.jsp?catid=36

 

Your MS nurse, if you have one, may be able to supply hard copies.

 

Hope this helps

 

[angeltess]

Hi Tracy, I know others with better advice will be along soon. I can only empathize with how you are struggling with 3 children - same here, though I'm not diagnosed.

 

There are some good links on here under the pinned section, which you could show to your Mum, to give an idea what it feels like - like the Spoon Theory. Or the MS Trust I think do some leaflets aimed at family members. I haven't seen them yet, but I think I'll get some should I get a diagnosis.

 

It must be difficult for your Mum to see you struggling, but maybe these things could help a bit. Take care, Jan. xx.

 

I just noticed John was posting at the same time as me - with excellent advice as always. xx.

Edited 26 Oct 2011, 6:08 pm by angeltess

[Nick]

Kizzy, I think most people have, in one way or another had this problem. Stumbler has it spot on. The thing is that it will take you , yourself a good while to understand your 'new capabilities' This can be a more positive experience than you may think, yet it is often hampered by other well meaning (but not understanding) people. So as explained the way to view it is to realise that it is not just yourself that needs that understanding. Trying to explain is just so difficult ! and boy its frustrating! It can also make you feel guilty ! All that needs to get sorted and it will given a bit of time! I know for a fact that some of my family still don't understand. Its something you all have to work at.

[derby42]

Hi there. Sounds really difficult for you. Im relatively new myself and cant therefore say very much but the good people on here have stressed to me how important it is to avoid stress at all costs. Im only just starting to listen and appreciate the value of that advice and still have some really hard days worrying about stuff. The other important thing is rest, youve only just been diagnosed so you need to get your head around that.. . You have children too and theyre tiring enough without ms. I cant even look after mine yet and its been over 4 months since diagnosis. Your mum obviously doesnt understand yet. Once she does then things will be different im sure. In the meantime stuff the decorating . . If you dont want to go out then find the kids something to do at home and as for the washing. . Well whats a washer? Its been that long since i used one! You need to look after you to the best of your ability right now and if you get the stuff that johns spoken of and look at the stuff jan mentioned then hopefully other people in your life including your mum will support you in doing what you need to do.

[kizzy]

Awww thankyou all so much Just sharing how i am feeling and having people understand makes me feel so much better , John i have just read that publication from front to back and i think it would be a great way to help her understand Its so detailed aswel i even learnt a few things myself I have tried to explain myself but its just so much to try and explain when until 2 weeks ago i didnt even know what Ms was , Thankyou all so much Xxx

[Nick]

Well said Derby! Spot on................ Kizzy this is what the forum is all about....helping us helping you and you helping us! .

 

My day has only just started and now I've started off happy reading this post.......always a good start

Edited 27 Oct 2011, 8:31 am by Nick

[lavender]

hi kizzy , totally understand were you coming from , my mum is the same think it is denial on there part . they do not want to think there loved one is suffering . they will have thoughts like , is this my fault ? did i do some thing wrong in pregnancy ? just eg ! the mind is a terrible thing , not used correctly . as the post states this illness effects everyone close . my 22 year old daughter as split with her partner , so i am trying to be strong , supportive , as mums should be ! my dad as alzimers , so am i the strong , supportive daughter ! when really i am falling apart .but oh no i can not let them see this , that would be failure on myself ! its so hard kizzy is nt . ms is not only a pysical battle , its also a mental one ! but come on lets win this battle !!!!!!!! lol xxxx

[sammyj]

family are never easy. i have the opposite problem with my mum. i am well and she always assumes every minor little thing must be MS related. most of them are just life related!!!

 

mu husband on the other hand is in denial. dont think he quite understands what MS is all about. if its not a chest infection that can be treated with antibiotics he doesnt get it!

 

i think if/when i have a relapse i will give him some of the info people have mentioned. no good baffling him any more at the moment.

 

 

btw he is really annoyed that i get a free flu jab. he has chronic chest problems but does not meet the criteria in our surgery so has to pay in Tesco. 'life's a b*tch, and then you marry one' (or so men say!)

 

take care

x

[jezebel]

My parents just didn't undertsand what was instore for me, my family & them....they heard alsorts from people they knew who had this idea & that idea...i found some good info on ms , printed it out & gave it to them to read when they wanted to & to look at if i mentioned anything. Luckily they've never told me to buck up or do this , do that...but i know they don't understand what my life is like these days. I think part of the process is you getting things right in your head first, concentrate on that, then you can deal with whoever else. If you like i don't mind emailing the info i have, but its totally fine if not

[kizzy]

Thanks everybody, I am glad i am not the only one who is having this problem, I know she means well just doesnt understand or does not want to. Ive had a really good couple of days so have done a fair bit in the house and work wise so that should keep her happy for a while If you could email me any more info that would be great thankyou X

[Dianni]

Hi Kizzy

 

Glad to hear you've had a good few days. The trick is to learn how much you can do when you're well without having to pay for it in a few days. (If any one has this formula, please let me know, because I certainly haven't figured it out yet )

 

 

Some one explained to me that because we as patients live with it, we have first hand knowledge of how we feel at any goven moment but family and friends get it second hand and as such it takes them a while to catch up and are always a fair few steps behind us.

 

It takes us a while to get our head round what MS means and how it affects us, so it's hardly surprising loved ones struggle even more.

 

My dad has always been the type thats sees the glass as half empty, so I very rarely let on when I'm having a bad day as he'd have me dead and buried (in his head) bless him

 

My husband is oblivious to everything and takes the stance that if he pretends it's not happening, it'll go away. Luckily my brother is level headed so he's the one I moan to when I need to (as well as people here!) My grandsons are monkeys and when they don't want to pick their toys up or whatever, they tell their mummy that their legs/arms/eyes are rubbish so they can't do it!

 

Funnily, they never ask to go to bed early because they are too tired to stay awake though

 

 

 

I definitely found the Spoons Theory helpful. I showed it to my kids and all at once it was as though a light bulb went on and they all 'got it'. Now we talk in spoons. (A friend who's son is a petrol head, adapted it to a fuel tank and he talks in litres of petrol!)

 

Hugs

 

Di

 

xxx

 

 

 

[Nick]

Lovely explanation Di...pretty much how it is. I think time has an important role in all this...' the family lag' is true but I have found the one person who understands me best is Kay my wife who has been on the journey from day one. What is annoying and brilliant about this is that she now has a better perception of where I'm at, at a given moment than me! This can only be achieved when the other person know's everything about your situation. Other members of my family has still not caught up and lag miles behind! Again frustrating, annoying....laughable at times.but thats how it is.