I know nothing but want to help

Everyday living
1

Hi

I am in a relationship with a wonderful lady that has MS. She is absolutely amazing and i want to do all i can for her to make life easier for her. I have read a little about MS and really still do not understand what she is going through. I know i should be asking her and eventually i will but i belive in preparation and at least have a little understanding. I love her to bits and MS will not change the way i feel. I have no-one to talk to about this so any help or advise would really be appreciated.

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Hello Paul

As you already realise, the best person to ask is your partner.

Full marks to you for joining here and asking us. But what you need to realise about MS is that it’s different for all of us. My MS is likely to be completely different to your partners. You can find some general information about MS on the tab at the top of this page marked About MS. But in terms of what symptoms she lives with, the variety of MS she has, the drugs she takes (and side effects!), the feeling she has about MS, honestly, you have to bite the bullet and talk to her.

I suspect like many men, you want to take the thing to pieces, find out how it works and thus how you can help to make it better for her. The trouble is you can’t. All you can do is tell her that she is wonderful, truly amazing and that you love her to bits, and that you’d like to know about her MS in order that you can support her in whatever way she needs. Also that MS will not change the way you feel.

Best of luck

Sue

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Thank you so much for the advice. I will speak to her and trust me it will never change how i feel.

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Ah it is no nice to read this.

OK this isn’t MS but my friend has a few issues and one of them is her neck and she can barely lift her arms above her head ok. Now this has been going on for a long time, so her husband is totally aware of it. she is in a lot of pain too.

She rang me yesterday crying her eyes out. I managed finally to get her to calm down. essentialy he had asked her to help him with something he was doing, and this required her to hold something UP. Well the word hold up should have been a clue to him. She couldn’t do it for more then a minute and he got really frustrated with her and angry and told her she was making it up and didn’t want to help him. I was furious to say the least and he is lucky i wasn’t in reach lol.

Now he does this a lot. He does not observe how she is or what she says to him it goes over his head. She cant walk far either and bought a wheelchair, and he refuses to take her out anywhere as it means he has to push her which is limiting her life. they have been married 40 years. even though she is physically impaired she does all the work in the house and cooks every day at a great cost to her. she bought up 4 children 2 of them were born blind so her life has been hard.

really i know its not what you asked but it is so important to listen, observe and see what kind of things makes your girlfriend more tired, or irritable, or make her MS worse. For example for a lot of us HEAT, is a killer. It wipes us out.

so if its a hot day don’t suggest a long walk.

Fatigue, if she suffers fatigue watch when it happens, mine is always the afternoon from about 1 pm to bed time for me is 6 pm as i am exhausted, so if she appears to have that, then if she is having a bad fatigue day don’t suggest going out dancing in the evening.

Pain most of us experience it and it can be for many reasons. Over doing it is one of my triggers so if she has pain after she has done a lot of things, take note, and offer to help her.

It really is watching quietly and learning. As yes we are all different it is called the snowflake disease. One of the main issues though I think is fatigue.

Oh yes bladder. when hubby and i did venture out we would find out where all the toilets were on route lol, as you could bet you I had to stop frequently i found just going out caused anxiety which made my bladder overactive.

However, it also depends on what type of MS she has. I am PPMS which means it is supposed to be slowly progressive but i never get a break from it.

RRMS hopefully she should be on meds to slow it down, and could have remissions where the MS goes quiet. If she says she has appointment to see someone about her MS perhaps you could offer to go with her and support her.

I think it is admirable that you want to find out and help.

Believe me one thing she wont be exaggerating, and she will be although appearing to be coping with it scared.

I expect she will be trying to keep a low key as she doesn’t want to scare you off by appearing too disabled. so it is important to talk to her. also sex may not be the easiest thing for her, but she again will want to please you, so TALK TALK TALK, be gentle which i am sure you will be, and remember this is a disease which progresses, so you have to be prepared for changes. so you will have to be on guard.

My husband was great with me. he never demanded a thing, if i was tired he would ring for a takeaway so i didn’t have to cook. He would do it, he wasn’t domesticated so i knew how difficult it was for him to cook but he would make me cheese on toast, or chopped egg on toast (my favorite god i miss that) or open a tin of mincemeat in gravy and add smash to it with a tin of peas (if you knew me you would realise thats my worse nightmare lol), but the fact he did it for me, was the best thing ever and I would just eat it all up. He would always make my coffee at 11 am as it was my routine, and get my little cake for me. would ask me if there was anything i needed or did he need to go to shops, but he never made me feel disabled by grabbing hold of me for support, he let me do that for myself which i appreciated more. I knew his limitations and he knew mine.

Good luck and let us know how you get on. x sorry for the war and peace but i have potty brain once i start i cant stop writing lol.xx

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As part of a disabled couple, and as part of any couple the most importnat thing is COMMUNICATION. And the 2nd is COMMUNICATION. So I was already walking with a stick when we met and i would say, I need a rest in the afternoon. I can’t walk that far. Ask if she wants help with anything. It may be anything from changing a lightbulb, doing up your shoes, your zip in the back of a dress…You’ve no idea how frustrating it can be to suddenly NOT be able to do something you once did. So maybe suggest romantic meal for 2 as opposed to mountain hike. HOWEVEr as has been said everyone is different. Mountain hikes may still be possible. If you can’t do certain things, you find ways around it. Its a process and I wish you both luck.

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reddivine is right about COMMUNICATION another thing to be aware of is that the goalposts shift all the time and rapidly, so your lady might appreciate your help one day but bite your head off on another so you need to be very flexible with empathy and sometimes just keep out of the way!

MS can exaggerate and amplify regular emotions to stratospheric levels. It is also important for you to have enough YOU time so that things do not become a chore or annoying.

Good luck

Mick