Searching for any inspiration and hope...

Caring for someone with MS
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Hello everyone, thank you for taking the time to read this & I hope it doesn’t cause offence to anyone…

Firstly wanted to say this is my first post, I think I’ve read near enough every single topic/post within this subject looking for anything; help, guidance, inspiration, hope, anything, anything that can help me…

I have been with my partner for 4 years, we are early 30’s, no kids, good careers & many life goals and aspirations we want to achieve. Around 12 months ago my partner was diagnosed with RRMS and to say it has turned our world upside down is an understatement.
I love her from the bottom of my heart, I am convinced she is ‘the one.’ I was planning to ask her to marry me in the spring, we had just had an offer accepted on a big house when out of the blue this diagnoses came and changed everything… I will be the first to admit I handled it poorly, I had no idea what MS was and so needed to research of which led to the engagement plans being put on ice and pulling out of the house purchase.

Upon finding out about the condition and reading some of the heart-breaking stories here it has made me doubt if I can cope with what may happen to her in the later stages of this condition. I am terrified of the condition, so hung up on it and cannot see past it & what it might mean for our future…
Nearly every day since the diagnoses I pointlessly (as deep down I know the answers I seek wont be there) check the MS Society’s research page, google research and any news that’s released in hope for positive information that delivers a more positive prognosis for her and our lives.

My main point/question her is; I cannot get past this diagnosis, it’s been 12 months and still I am obsessed with it & what might happen. I am contemplating leaving as it is consuming me every single day but I know I love this girl so much… I have had 2x counselling courses and a CBT course to try and get passed it. Is there anyone out there that’s experienced similar feelings/emotions on this time frame? Anyyyyyy advice?

Her MS Nurse advised us not to compare our generation with previous ones due to DMT’s (She’s started on tecfidera) & that her relapses (1 numb foot 4 years ago - first relapse at 28 years old & now her latest numb/tingling foot, leg and itchy chest) are on a more ‘encouraging’ scale in respect to the log term prognosis. Are these comments reality or is it still as I understand from research, a total total lottery on progression?

I know for certain I can support her completely through a lot of MS, mild symptoms, bits of care, emotions and side effects from it all, the thing that I am so terrified of is if she becomes 95%+ dependant on care, me and others. Nurses coming into the home, talks of rest bite and other clearly challenging/difficult times, especially where for example I would need to fulfil the 24/7 care roll in my 50’s…

I wish I was more confident & ready for this but I know I am not… hence why I am reaching out for any advice anyone can give me. I want to be there for her & enjoy life together but fear I’ll never get ‘there.’

Thank you again for anything encouraging anyone can provide, I read these topics with admiration of everyone’s strength and clear love. x

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Hi
If you want us to tell you that you’re over-thinking it… You’re overthinking it!

She’s “lucky” that her symptoms are so slight.
Many people can live with the condition for 50-60 years from diagnosis. Especially with DMT’s, MS has become something one dies with rather than someone one dies from.
Current stats suggest life expectancy may drop by perhaps 7 years.
MS may curtail a career in extreme marathon running (for example) but there will be so many things she can still do. Concentrate on enjoying them and on enjoying life together - you never know what is around the corner - for either of you.

In my personal case, I’m late 50’s and can trace back my first episode 18 years although was only diagnosed earlier this year. In my case, I was ignorant of having something with a “label” but lived life day to day and only stopped playing competitive sport a few yars ago. Let your lady live her life and enjoy your life together - don’t wish it away.

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If you doubt whether you’ll stay the course, you probably won’t. It sounds as though your bags are half-packed and you’re just looking for a way to give yourself permission to leave without feeling like a heel. The bad news is that there is no way for a good person to leave without feeling the painful contrast between the man you are and the man you liked to think of yourself as. But that’s your burden to bear, I’m afraid, and there’s no way round it. There is no pain-free option for you. Or for your partner. Please excuse my bluntness.

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No one can predict the future or how we will respond to it. It is reasonable to be scared, but try to live in the here and now. The fact that this news has halted engagement and house purchase plans says a lot. You can either adapt to how things change in everyone’s lives, or you can try to maintain a construct of how you want things to be.
No one gets everything right but try not to lose sight of what you’ve got.

Wishing you both all the best

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I agree with everything said above, but I really have to side with Alison on this one. I’ve had MS for more than 40 years now and only had to quit working about 2 years ago, but there were times during my marriage and raising my children when I really could have used the support of my husband and didn’t get it. He could never grasp how I could go from being great to needing to lay down and rest in the span of a few minutes.

With all the DMT’s they’ve created, and more coming along every day, your girlfriend has an excellent chance of living her life with few issues, but there’s always that unknown. Just like you don’t know if you’ll be struck by lightning tomorrow and left with permanent vision loss or hit by a drunk driver and wind up a paraplegic.

The fact that it’s been a year and you still haven’t come to terms with it says a lot. End the relationship now while you’re both still young enough to find someone more suitable.

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The one certain thing about multiple sclerosis is that the future is uncertain.

We are all different. That’s true for our MS as well as generally for individuals. Nobody’s MS is exactly the same as another.

What you’ve been told about previous generations and MS versus the current generation (in terms of date of diagnosis) is true. The prognosis for the newly diagnosed now is much better than at any time in the past due to the number and efficacy of disease modifying drugs.

But the problem with MS is that no one can be sure of their future. Equally, the problem with relationships is that no one can be certain of the future.

What if you stay with your partner, then in 5 years time you develop Motor Neurone Disease or any one of thousands of disabling conditions. Would you expect her to stay with you? Would you expect her to look after you if needed? The chances are that she’ll be pretty much able bodied.

Have you wondered if she’d been diagnosed a year after you married? Would you still be wondering whether to stay with her?

I kind of think you must really be clutching at straws, to ask the members of this forum, the majority of whom have MS whether you should leave your newly diagnosed girlfriend.

Are you actually asking us for absolution for when you leave her? Or for our forgiveness in lieu of asking your girlfriends forgiveness? Or even wanting to be told ‘you’re absolutely right, I wouldn’t expect the person I love and who I thought loved me, to stay with me post diagnosis’?

If you decide to stay, to be honest I pity her. If she develops more advanced MS, becomes disabled, needs care or personal support, it seems to me you are not the man to give it. So she’ll end up on her own with her disease. I suspect she would cope perfectly well without you. Maybe she’ll meet someone else, someone who understands that no one is 100% certain they will remain able bodied or with their full mental capacity for the next 40 or so years.

I’m not going to apologise for straight talking. Nor for being rather critical of your conscious or unconscious motivation for asking our collective opinions. I think you are looking for a way out.

I’ve just read your post out to my husband along with Alisons reply and mine. He is less straight talking than me. He is kinder than me. He had the option to leave me after diagnosis 6 months after we met. He had the courage to marry someone with MS. Yes, I was able bodied then. I’m not anymore. He’s still here. He generally agrees with my post.

I really hope your girlfriend meets someone who really truly loves her, MS and all. As for you, I really hope you don’t end up in a relationship where the person you’re with needs help and care. The fact is she probably won’t get it.

Sue

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Hi Alison,

Thank you for the response, I do appreciate your honesty & input.

I apologise if it appears I’m trying to seek sympathy and I completely understand nobody anywhere will be able to say “it will be all ok, I promise.”

I must slightly protest with the comments of ‘looking for an excuse to leave.’ It’s quite the opposite. I want to stay & I want to be the man my partner deserves through all of this. But right now I’m not, I’m a shell and as described I’ve explored so much to try and get me there… hence now trying to reach out to real world people, partners, people with experience rather than just reading countless blogs and medical information.
Seeking maybe partners who have felt similar at the start of this journey but as time has passed and experiences came along, their stance has changed and can provide any help here…?

I guess I’m just desperate for some hope for the future, something to cling onto & that it can be a bright one.

Once again I am sorry if I’m causing offence to yourself or anyone, it’s not my intention at all.
Thank you for your time x

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Hi GC,

Thank you for your reply & sharing. I most definitely am overthinking it all, it consumes me almost every moment of every day. :persevere:
I think I’m still mourning the loss of a life I envisaged for us both & now having to adjust to the prospect of something quite different… but just how ‘different’ is what I’m struggling with so much.
(As a person I prefer to not bury my head in the sand with anything & know the reality of things…)

Can I ask if you have a significant other, how if any they’ve managed to approach this? Do they adopt any specific thought processes or philosophy’s?

I liked your comment of not wishing my life away as this is something I feel I’m very much doing. :disappointed: It’s been 12 months and still feel as lost with all this as I did on day 1.

Thank you again x

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Thank you everybody for your time, I very much am clutching at straws here and feeling helpless & desperate. Am I feeling like 90% of the partners did at the start?

Whilst I understood the majority of everyone here has the condition would reply, I was hoping to perhaps come across partners having felt similar, but have managed to overcome the initial shock/fear & grief & now have managed to come to terms with it… perhaps anything that worked for them? Anything that they could say at all…?

I’m very sorry to have caused offence, I completely understand everyone’s anger to my approach & comments here, it’s just I am trying absolutely anything to be the person she needs me to be as this is something neither of us have ever come close to having to face.
Thank you everybody x

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Thank you for your reply. I think my point is that, if you were a keeper, you would not be agonising in this way: you would be standing steadfastly by your woman, and you would be thinking more about her and less about yourself. I’m afraid I didn’t get the impression from your post that this was the case. I wish you well - it’s a bad situation you’re in - but I’m just not sure you’re cut out for this. But I would be delighted to be wrong.

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Hello again
I’ve just caught up with the thread and just collecting my own thoughts.

To repeat the statement above - try to stop overthinking it. The enormity of the discovery and the possible outcomes has obviously enveloped you. You sound wracked with guilt over something which hasn’t happened yet.

I would add that you should concentrate on the positives. Sounds like you and your partner have had a pretty good life so far. Able to afford the big house and both have good careers, everything has been going your way. And now you’ve hit a bump in the road. A major bump. And it’s knocked you sideways. That’s understandable.

Now go and look at your girlfriend. Is she still as beautiful as she’s always been? Did you feel proud and elated to be with her? Did she make you feel special? Now think about how she must be feeling. Not you - her. Her life plan has been turned upside down. Is she still working hard? Is she looking to the future? Is she blaming you?

Notably you wrote that you love her and she IS the one. Not was, IS. Present tense, so it’s not over yet. And you’ve written about her diagnosis but none of her symptoms. It sounds like her condition is barely manifesting itself so you’re freaking out over something that could develop incredibly slowly.

Just love her for who she is and love her a day at a time.

Yes, I have a wife and she has been amazing. I’m late 50’s, she’s early 50’s and between us we have 5 kids - the oldest is 25 but the other 4 live at home. We’ve only been together 6 years and my symptoms started properly just a year later. I’d been misdiagnosed so only got an MS diagnosis earlier this year. It knocked us both sideways - the previous diagnosis suggested something operable and I would return to better health but it was not to be. We’ve ridden out the disappointment and adjustments together though it’s not been easy - of course it hasn’t.

The One. As it suggests, you can’t just trade one in and pick up another. Your life may have taken an unexpected turn but there’s so much more that you can share. Be brave.

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You are very right… I know the overthinking is what has led me all this way! It’s a terrible trait of mine.

I’m biased, but she is the most beautiful human in the world, even more so now with how brave she’s been and how not only has she had this news to deal with but she is more concerned about me which obviously isn’t right.
She is an incredible person & yes I feel so so proud to be with her. She is all I’ve ever wanted in life & feel this condition will rob her from me… here comes the overthinking again of what ‘might happen.’ :persevere:

Her symptoms are largely minor, sensational issues with a short bout of optic neuritis too. As mentioned she is on a DMT now. She is still working hard, seeing her friends and getting on with life, she is so resilient (at least on the outside). Writing all this about her kind of highlights how I don’t deserve her.

Wow sounds like you have your hands full your end, the children alone must have you both extremely busy!

Thank you for such a positive response, parts here really hit home & brings a tear to my eye. I know I have to be brave for her, follow my heart not my head & absolutely not focus on the ‘what if’s.’ - it gets us nowhere other than this horrible vicious cycle we/I’ve been living in for a year. X

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One of the benefits of my MS is that I am now better at living in the ‘here and now’ and enjoying stuff as much as I can. Having been in a relapsing remitting stage, I know what it is like to have capabilities taken away with only some coming back fully or partially. It is a git of a condition. There is a big difference between being aware of ‘What ifs’ and overthinking or obsessing about ‘what if’ . If you worried seriously about all of the negative ‘what ifs’ we all could face, you would never get of of bed or do anything. Make the most of every day and deal with stuff if or when it comes.
Good luck
Mick

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But where is your partner in all this - what are her thoughts ?

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Thank you Mick, I can clearly see a theme here regarding my overthinking. I have read in other topics people have found help reading and researching ‘mindfulness’ to help combat this.

Living in the here & now is something I need to learn to do without a doubt.
Once again, thank you for your time in replying X

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She is devastated at how badly I have taken this, she is consumed purely on trying to make me feel better, be stronger and ‘accept’ the diagnosis so we can get back to doing the things we love doing and living life as a couple and the best friends we are.
My behaviour making her feel this way makes me feel even worse… it is a vicious cycle. X

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You are in a bit of a hole aren’t you…

You’ve made her apologetic for having a condition which probably means she’s afraid to share with you her innermost thoughts and fears, for fear of driving you away.

Sod mindfulness and research - just spend time together, being you. Get your mojo back - perhaps book some holiday time. Concentrate on making her feel beautiful and special and she will reward you with love. Tell her you’re ALL IN, for the distance, no matter what and stop looking round for something better: She will sniff out any hesitation in a heartbeat. Chances are you’ve got a good 30-40 years or more with “THE ONE”, the alternative being an indefinite time with one or more and the guilt of letting her go.

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Hi,

You sound very conflicted. I think you need to decide to what be worse. Leaving your partner now or caring for her should she need it in the years ahead.

When we meet someone and then decide to spend our lives with them, it should always be with the for better or worse mindset. Otherwise, do we really love that person?

I know beyond any doubt that I would do anything for my husband if he became ill and needed me to be his carer. Think I’d have felt that way even after a very short time of knowing him.

We’ve been together 23 years. I am now struggling with symptoms which may or may not be MS, still to be diagnosed. He’s being supportive, but of course I don’t know what’s really going on inside his head. I imagine hrs quite scared, as you obviously are.

Maybe you could go onto a family/carers support group for MS and ask a few questions there? Maybe Facebook has some ms carers pages? Anyway, I hope you find the strength to be 100% behind your partner or the courage to walk away if you know you can’t cope.

I wish you well.

Winnie.

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Very much so… a hole that I’m struggling to climb out of. I’m sure I speak for mean people when I say this came out of nowhere & shocked us both.

I hear you, so what you’re saying is treat ourselves to a lovely trip/time together and go enjoy life!? I think I can do that. :slight_smile:

I do really want to say those words to her to reassure her… she’s very intuitive and will be able to tell if ‘I’m just saying it.’
I’m going to take your advice regarding spending the time and enjoying each other whilst find a CBT book on ‘overthinking’ & ‘worry’ as it is something I feel has taken over my thoughts in this whole situation & as someone else here has said, I’ve lost sight of what I have. My thoughts are irrational and based on fear rather than facts.

Thank you x

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Hi Winnie,

Thank you for taking the time to respond and sharing. I’m sorry to hear of your symptoms & hope you manage to get a diagnosis soon (ms or not.)

I’ve found it incredibly hard to have to contemplate it all at what I still feel is a relatively young age of 32. Of course none of us know what lays ahead as we get older and it is realistic to assume in a relationship when we enter the later stages of life, that ‘care’ will be needed by either or both parties, it’s just nature. But this is something that has always been a ‘who knows if it’ll happen, I’ll cross that bridge when I come to it.’

Having now received the diagnosis it all of a sudden feels as though this ‘bridge’ (albeit the idea/thought) has been brought to the here and now completely out of the blue.

It is an incredibly daunting & overwhelming thing & as has been highlighted before, I do think I have been overthinking and somewhat catastrophising it all.

She is a wonderful women & deserves a man to stand in front of her, look her in the eye & tell her it’ll be ok and we’ll get through it as a team. I want to be that man and most importantly, believe in what I say… which is where I’m struggling.

Thank you again, all the best x