Last reply 10 months ago
Love, light and loneliness

Well I think that spring time is a good time to ponder our mental health, as well as our physical health. I think this is just as important, if not moreso.

My definition of love has evolved and changed a lot since I have had MS

So my question is, how has having MS changed your perception of love and loneliness and how has that impacted you physically and mentally?

I know that this isn’t a dating site, but it is a place where we can access genuine understanding, sadly missing sometimes for us.

And isn’t understanding one of the cornerstone of any good relationship?

Oh, and has anyone made a connection here that has resulted in an enduring relationship (platonic or otherwise); or even marriage?!

Discuss if you dare!

And Happy Easter folks!

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11 months ago

@mermaidia11 , I have forged some good friendships from these forums. It’s purely platonic, as we never meet. Well, except for an American lady, who went out of her way on a holiday to the UK, to have lunch with me and my wife.

There’s no reason why these types of friendships couldn’t progress to romance, if you were both available.

11 months ago


My perception of love has also changed a lot…..i used to be one of those silly romantics. Now realistic i find love very difficult….there is always one in a relationship that is more outspoken (not sure if that is the word) but if you are the other one ….. the one that has to give up the most ….the one that becomes more and more invisible…. tough…. really tough

11 months ago

My love left me with two weeks of being diagnosed with potential MS in fear of me being bedridden for too long. It didn’t make sense to me and completely destroyed my perception of life. Being diagnosed this bother me as long as I met my goals of graduating university and being with her. But after she left it was difficult to focus and on top of that my recovery though truly miraculous took too long and I had to drop the semester. I am currently dealing with it and I feel much better. I believe love can still occur though but one in many.

11 months ago

Nice thought provoking post Mermaidia11 !

Maybe you too like me have had too many Merlots this even – for that reason I won’t comment right now, but I might come back to this one…. if courage allows me 🙂

11 months ago


Love is just a word. What we need is support “until death do we part”. Adoration is a bonus – but someone who likes you for who you are; sticking by you until the grave. What more could one ask for?


11 months ago

10 years living with ms hasn’t changed my definition of love. I enjoy the ongoing support and caring of family and friends (even if some days they make me want to rip my hair out;) ).

Tons more alone time to fill when I quit working a couple years back. Volunteering, new hobbies and new friends help a lot.

If by understanding you mean empathy … I have been blessed with several new, and I’m hopeful, enduring friends, near and far, who can relate and commiserate in ways that family and old friends cannot, as they are dealing with chronic issues of their own. One in particular who I met on this site. But while these friendships have their roots in common ground, there is so much more to each of us than the circumstance that brought us together. I’m thoroughly enjoying getting to know more about these fascinating and complex individuals.

Above said’ not all relationships stand the test of time … But there are any number of reasons for that. @mermaidia1 Why has your definition of love evolved/changed?

11 months ago

My wife well ex couldn’t handle it when I had to use a wheelchair and kicked me out so I’m starting all over again a new chapter I suppose we’ll that’s life but like the wise men from the band the Beatles said :-
All you need is love love is all you need
I must be mad though 😊❤️

11 months ago

If it hadn’t been for MS I would have left this place and this relationship long ago because that is what I used to do: just change whatever and certainly not face what was right there in front of me…That really was my way of dealing with problems especially in relationships. Despicable, of course, I know. To me, love had to adjust to every situation…if that didn’t happen I was out, one way or the other. One thing I have learnt so far, after much thought and consideration, is that there is still so much I need to learn, all the time, from anything that surrounds me, from whatever happens. Especially about this thing called LOVE…
May the Spring bring colourful flowers and a scent of warmth to all of you!💙🌼💛🌸🌻

11 months ago

Ach my heart and love goes out to you all thanks for replying. Theresa u r a doll✨💕💐💕✨

I typed this before I read all your comments…

I wasn’t under the influence of anything, or owt as fancypants as Merlot, it’s sickly cocktails n procecco for the chicks up north lol (But after sundown, one has standards!)
You are all right in what u say
Summed up with the Beatles lyrics as well – is right is RIGHT

So Nope before , it was nowt but thinking it was time I fell in love again, (after a rough ole year getting to grips with this ms as a sickly, single mum); the spring sunshine, a beautiful beach , poignant tune and an article about how lack of love can kill, if I’m totes honest!

Yes my concept of love was much different before I had to put up with the symptoms of MS, and I didn’t ponder it too deeply in truth. (I married a plonker for a start lol) but my emotions and b/s radar now seem hyper sensitive.

I’m much more emotional, even when I am trying to remain equnaminous. A beautiful gesture, my child’s giggle, a view, piece of music, (a cute bunny on the telly ffs!) can move me to tears.
This didn’t used to happen to me.
Anxiety , anger and worry about things I know shouldn’t effect me so, now do more Intensely.
I have spoken to my neurologist about this, and she confirmed that more emotionally intense feelings can be as a result of MS…

In addition, Love revealed that it can be shallow and soulless and selfish, based on fulfilment of needs, assumptions and expectations.
My cynicism has only been increased by people who I assumed and expected would walk the line with me. (Their loss, my mistake I rationalise)
And wonderfully surprised by the people who did and do.

But I feel the bitter sting of apathy, indifference, impatience and frustration much more keenly.
(And try to avoid/divorce lol those people as quickly as possible obs. Whereas before, I would have put up with it and meted out second chances..

So Its changed my understanding so much, whilst at the same time deepening and intensifying any love I do feel.

It’s rather disconcerting and I still have a lot to learn indeed…ah well, I love a challenge

11 months ago

Great question to ponder @mermaidia11,
The biggest thing I’ve learnt since diagnosis is the most important love is “learning to love yourself”…I know, I know its a cliche but learning to be grateful for my own company, being comfortable in my own skin and showing/giving love to others has afforded me much more reciprocal love by others than I could ever have imagined.
Having been diagnosed at 19 my boyfriend and I did get married but his take on my MS didn’t align with mine so it ended up in divorce. He didn’t leave me, I left him. There are so many things I want to do with my life to prove to myself that having MS shouldn’t stop me from doing or being anything I want; he couldn’t cope with that. His idea was I become a hermit, he looks after me and we live a life on state benefit. Stifling…not the type of “Love” I needed.

I was quite happy to be alone as I had to deal with consequences of my choices. I took myself on “dates” with myself, took day trips to places around the UK and enjoyed my own company; I learned to meditate, began cold exposure with the Wim Hoff Method & learned about myself. I gave more…in terms of noticing other people and what they did & I told them. I did more random acts of kindness & I found the more I said or gave to others the happier I was.

A long term male friend asked me out for a drink after meeting me again after a few years (knowing about my disability) and the rest all fell into place.

I’ve carved a good career in-spite of being a single parent and got married last year to this fantastic man who gets my stubbornness and independence but yet is equally compassionate to me. Ive had to take retirement through ill health but when I did he said that was something that he had anticipated might happen. When I asked him what had made him ask me for a drink he said…” It’s your confidence after the divorce you became so comfortable with yourself, you’re willing to laugh at yourself and you never give up…it’s inspiring”
The words will stick not because they are so lovely (well, I guess that’s one reason) but because I realised others were noticing how I had begun to love myself.

I never expect anything nor assume anything of anyone so everything is a wonderful surprise and a bonus. Learning to love myself has marked a turning point. I wish you Health and happiness in your journey X

11 months ago

@affibelle Thanks chick so much for that, wise and sage advice and I’m grateful
It’s people like you and stories like that which do inspire me! You go girl!
I’m following the same path as you and heartened to hear the end result!
I’m up and down like a tarts knickers ( as they say in Liverpool)
So not sure that I can trust myself with someone else’s heart, never mind my own…
I got a bit of blind faith and confidence will reach out, thank you

11 months ago

Sort me out lol

11 months ago

Married, with 2 sprogs who light up my life, most of the time 😜 With MS come re-evaluation of what matters. I call it being introspective rather than selfish but I know I can be that too. I am on that much sought-after conveyer belt to the fairy tale ending. According to OK magazine…how lovely🙄 But oh how things change, it’s a lonely time for sure…Btw my Dad quite often uses “up and down like a whore’s drawers” on a lighter note 😀If he’s talking about my mood he’s not far off either @mermadia11

11 months ago

My diagnoses has definitely caused me to question the loyalty of those in my life, after getting diagnosed I wouldn’t want to talk about much but MS so those around me I guess felt smothered by me, and it made me feel like these particular people weren’t really as loyal as I thought. I eventually just had to back off and give them space.

11 months ago

Hey @mermaidia11

Happy Easter chick 🐣🍫!

I’d say that my perception of everything has changed, like others that have posted, my marriage broke down outta the blue mid diagnosis a couple of years ago. Was it the MS, or everything else, I’ll never know but it definately opened my eyes.
However, I don’t feel lonely, I have two amazing and beautiful kids who are my 🌍 and my reason for fighting as much as I do 😍!
I have amazing friends and family and I love my job 😊 so my life is filled with ❤ already😊. What I did learn is that you do have to love yourself first, be happy with who you are 😊.
I’m not waiting for a knight in shining armour, heck I’m definitely no damsel in distress. I’m just gonna live my life regardless, glass is half full right 😊.
Take care chick x

11 months ago

@chezy17 Mornin flower! Thanks for the shout out!
Don’t be under any illusions that I’m a damsel in distress waiting for a knight in shinin armour girlfriend!
Don’t need that dynamic thanks anyway! Co dependant, dysfunctional love just ain’t my bag and I can fill my own glass after 7 years practice…

I’m queen of my own castle like you clearly are, I think that it may be nice to share said castle and spread and share the (intimate earth shattering cosmic) luurve .

… With mercurial, mermaidy ms emotions, which it a newer thing!

Sending love out to all for a eggstrodinary Easter x

11 months ago

There’s a piece of my story in a lot of those mentioned, it’s been an 18 year ‘ round trip ‘ 😢😬😴😃☺️😏🙃🤪🤨🧐😝😲 my conclusion at present ( it’s on going, so could shift, pardoned the pun) is that love is an ‘emotion ‘ that we have the ability to control/ mange , be it challenging 😳 & ‘ life ‘ is a game.. it’s how we choose to play it .. that’s definitely in our control.
And guys let’s face it, you all must be bloody warriors to have got this far dealing with this bitch of a disease , Louise 😘

11 months ago

I hear ya chick, queens of our own castles 😊…co-dependent relationships…no thank you 👎!
Intimate, Earth shattering cosmic luurve…you mean can’t eat or sleep kinda love, it don’t exist 😂😂😂…or maybe that’s the cynic in me these days 😂😂😂.
I’m the girl that has no clue about cars but will damn well try and fix it just to be independent 😂😂!

Hope you’ve had a lovely Easter 😊! X

11 months ago

It’s strengthened my relationship with my hubby. Been together since I was THIRTEEN believe it or not… puppy love turned into highschool sweethearts and then into life long love. I’ll be 30 in June, so while still considered young… my love is quite seasoned… but the past few years and trials and ups and downs and all the uncertainty…. medications…. treatments…. tests…. relapses…. pain….. disabilities and heart ache have definitely been the true test… but things may be pretty crappy for me physically most of the time…. he is truly the only reason my mental and emotional are stable most of the time! He doesn’t let me get to that place I’m sure most of you are familiar with at some point of complete darkness and despair!! So while it is SO hard on all of us…. MSers and partners alike…. and not all people can handle it and support us and love us the way they should…. there is still hope out there…. there are still good people…. love is still a possibility for all of us! And we deserve it just as much as anyone else! So we have to make it work for US! Just my personal experience…, ❤️

11 months ago

well I can say my love life has been well and truly horrible lately but that’s what datings like, sometimes you meet some awesome person with instant chemistry, sometimes they are not so awesome.

I had a lot of bad luck recently and I’m at a stage where being alone seems like the better option for me.

I will say trust is a big thing for me and that is something I didn’t find in the last 7 women I have dated in the last year.

the one thing that I guess is making feel bad is I’m just not emotionally available to anyone right now and I know someone who is interested in me, but I just don’t feel anything at the moment. which makes me feel bad for this person because maybe I’m throwing something away that could be great or maybe I’m just over being hurt.

either way I don’t feel like MS should matter in regards to love as someone said above have some fun but if it’s “death till you part” then I guess be that person and someone will come along hopefully.


10 months ago

Spring time is the time of the new birth, the sun is in the sky more than the dark, the flowers grow, foxes start shagging in gardens. My mental health is good, looking forward to getting stronger and getting back to Goldsmiths uni, getting out of this wheelchair and back on my feet, getting some rays while all the wellers are stuck in offices staring at computers and trying to convince my lady to join me in a drive to Littlehampton. Physically? I can work with it but need to get a more sexy wheelchair rather than the one the local council gave me, bless ‘em.

My perception of love? It has to be pure. I can’t be the wide-boy ‘shagger’ anymore, quickies are not so quick. As a man, I have the ‘man problems’. A little blue pill and still have my rod of iron but I either have to guess, for better or worse or I have to hope I can seduce as cunning linguist, which I and my wife enjoy so i’m golden…

And my wife. Me a scrawny white guy stumbled into an all black Church and things happened, born again, and after two years married a very strong big black woman and so life continued having to open up all my notworkings, being humble and just love, love, love.

I am not lonely, when I was I looked at porn and smoked drugs and took pills bought over the darknet, hey, shucks, bores me now. It is all about real people now, interpersonal interactions, conversation to discover, joining groups of likeminders and strangers, love everyone, realise your strength, see that strength in others and indulge yourself without guilt in what makes you happy and feel good! Love you all! Ta, ta xxx

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