Last reply 12 months ago
Partners

Hi everybody,
I’m new to this forum. If its ok with everyone I’d like some advice.
I’m here because I’ve recently started dating a girl who i feel very strongly about. She has just confided in me that she suffers from MS. Specifically RRMS.
I know very little about this apart from what I’ve literally just read on google.
Is there someone here who can help me understand this condition and help me to understand what i need to do to support my partner?

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vixen
12 months ago

Hello there, it sounds to me like you are an incredibly understanding partner to even be here! I think the hardest thing about MS for me, is that I don’t understand it myself so it’s really hard to expect others to understand it. It’s almost impossible to communicate how MS can make you feel. You never know from one day to the next and of course, no two people with MS have the same experience. There have been several posts lately from MSers who are struggling because their partners don’t understand. If you go into the search box on here and type ‘partners’ or ‘relationships’ you could have a read through some of things which come up. My partner is brilliant at just allowing me ‘to be’. But that means I’ve had to find a way to be able to communicate what I am, feeling, I can’t expect him to mind read. Do you know anyone else personally with MS? There is a members map on here which shows you where other Shifters are located, so that might help. I hope you get responses to your question, it sounds like your partner is fortunate that you care so much. All the best to you


marlon025
12 months ago

Hi Vixen,
Thank you for your comment. I’ve looked at the map, It appears to me that no one close to my location is active. Thats ok though. This is the internet, distance isn’t a thing.

You are right, I think that now its in the open it’s definitely easier for me to deal with and understand.
I only want us to be happy. I feel that if i understood it better then i would have a better understanding on how to treat her when she has her relapses. (A thing i think I’ve come to understand) I now know its not her fault. I feel i need advice on how to be around her when she feels down. Do I “just let her be” as your partner does? is that a good strategy? I feel that’s not good enough. Is that what you want from your partner? I want to be there for her. Do you have any advice on what i can do to help her?


Anonymous
12 months ago

Marlon025
I’d say the best options is to ask her how she wants you to be around her. I know for me I just want someone to listen, cheer me up and treat me like you would any other partner but that’s me. I’d say the best advice would come from your partner and ask her how she lives with her MS.


stumbler
12 months ago

@marlon025 , it’s good of you to join us on behalf of your partner. She’s lucky to have you.

Firstly, avoid Dr. Google. You’ll only find horror stories, which are completely out of context. Stick to creditable sites like the MS Trust or MS Society. In fact, the MS Trust publish, at no cost to you, a series of booklets covering various aspects of MS. You may find the “Newly Diagnosed” section very useful:-

https://support.mstrust.org.uk/shop

Also, this previous topic may give you an insight into some of the problems that we may have :-

Describing your MS Symptoms

Otherwise, you’re most welcome here. It’s good to hear the views from the “other side of the fence”. 😉


marlon025
12 months ago

@ stumbler. Nah, Im lucky to have HER! Thanks for the links, I’ve read up as much as google can give me. My aim here to to speak to other people affected so thank you so much for the feedback.

@Dominiqueg Thank you for the advice. Communication is definitely key. I would never treat her any different. I’m just trying to understand this for what it is. My future lays with her so I want to get a better understanding of her needs so we can both be happy. You know what you girls are like. it isnt always easy to get a straight answer! haha!!


Anonymous
12 months ago

@marlon025
I always give a straight answer and I’m very forward with what I need. I think the easiest thing to do is ding what her symptoms are and read up on it.


marlon025
12 months ago

Thank you Doninqueg, I was only trying to make light of it.

She tells me her biggest symptoms are Fatigue and ‘grumpyness’ both of which i can deal with. I am concerned about how it might progress though. Im still learning


Anonymous
12 months ago

@marlon025,
The thing is no two ms are the same so it’s hard to tell what her progression will be. That’s the thing that’s really hard.


hmcampos
12 months ago

@marlon025 great attitude of yours! An example to many.

As for documentation, those helped me a lot:
https://overcomingms.org/
https://www.justkeepsmyelin.com/

Good to know you will be there for her!
Cheers
H


petlamb
12 months ago

Hello @marlon025 and welcome,

MS is such an unpredictable condition and is typically different for every single one of us. You say her biggest symptoms are fatigue and “grumpyness”.

FATIGUE is a major problem for a huge amount of us. After aeons of desperately trying to be the hero and fighting it, in recent years the penny has dropped I’ve realised that when it happens you’re just got to give in to it and relax, put your feet up and chill or just get some Zzzz and start afresh afterwards or the day after. Fatigue is all consuming and just takes over. There’s no way you can fight through it. It’s difficult for non-MSers to understand it properly, some of them wrongly thinking that it’s just tiredness but OMG – it’s so different to and so much more than just being tired.

Regarding “GRUMPYNESS”, in my experience I was very angry for a very long time regarding my diagnosis. When I say angry, I’m including frustrated, confused and bitter and a whole host of negative emotions. Again, there’s no fighting it. Anger, frustration, bittnerness and other similar emotions aren’t going to help. They in turn will cause STRESS and stress to coin a phrase, must be avoided like the plague. If she tries to keep as stress-free as possible, she’ll cause far less damage.

Knowing what I know after 18+ years of MS, if I were to be diagnosed tomorrow, I would say stress free, eat a better diet and try to be more active on a regular basis. Little and often is the key.

BTW, she’s a helluva lucky girl to have you looking out for her. 👍 😊


petlamb
12 months ago

@marlon025,

Regarding supporting your girlfriend, you’re already supporting her. Carry on like this along her MS journey and you won’t be going far wrong – listen to her be ready with support. You’re already there.

Bless you for being who you are!

😊😊😊😊


potter
12 months ago

I am also a lucky girl I have a husband who is very supportive. Everyone has MS differently, I had one aunt who just had trouble with foot drop, another aunt had to move to assisted living facility when she was 32. I am 65 and my biggest problem is heat. So you can see MS can be so varied it is hard to get a grip on it. Is your girlfriend on a Disease Modifying Treatment? I was on one that made me so tired I would fall asleep looking at the computer. I was so happy when I changed to a different treatment. Do your research, new treatments and a search for a cure are happening every day. Potter


tracyd
12 months ago

@marlon025

as has already been said – Dr Google is an asshat …. stay well away from him 🙂

First thing to say is that RRMS in this day is something that can be managed and controlled. There are some awesome treatments out there now which have come to the fore in the last few years.

MS is more a set of guidelines than a recipe where you all get the same ingredients and instructions and at the end you’re guaranted the same result – it’s like the skills test round of Bake off where it all comes out a bit different and everyone’s hoping they aren’t the one told that they have a soggy bottom.

If you want someone to talk to who’s other half turned out to have MS – I’ll happily volunteer my husband – like me he’s quite open to talking to people, and he has the added ‘bonus’ (although I’m not sure that’s the right name) he’s the son of a man with MS as well as being my husband

You have a friend request

EDIT – and we’re driving by Newport next Saturday on the way to Mach 🙂


bensdad
12 months ago

So many lovely comments on here. Be patient, be kind, love is always putting the other person first. If you both do that you will be fine! You sound like such a nice person to be on here looking for help and advice! A nice bunch of flowers never go a miss!


marlon025
12 months ago

Thank you everybody for your kind comments. You have made me feel very welcome and are helping me understand this massively.

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