Hi all I’ve been with my partner nearly 6 years. I was diagnosed 6 months after we got together. Neither of us had any idea it would progress as fast as it has. I’m close to housebound now. I walk with a rollator, and have chronic fatigue in my legs so I can’t walk that far at all. Our tenancy is up for renewal in October and there’s a fairly large chance we’ll go our separate ways then. I have no idea how I’ll cope on my own, or where I’d live, or who would even help me move - I have no friends within a hundred miles, and no family. It’s literally him. So my question is, has anyone met a partner when they’ve had MS for a while? I can’t see anyone signing up for me now. I don’t feel that I have anything to offer. I can’t do anything ‘normal’ anymore, mainly because of my mobility issues, but incontinence makes it hard. I’m not sexy, or attractive. I’m terrified. I don’t know what I’m going to do, and I can’t see a future. I’m totally alone. It’s not going to be a case of spending more time with friends or family as I don’t have any. Oh god I’m terrified. So has anyone met a partner that can see past their physical disability? I’m still a person despite appearances.
So sorry to hear things are tough for you.Have you spoken to your partner about things.does he feel the same way as you? I would think if you have lived together for years that surely if you do split,that he will offer to help you move to a new place.Thats the main thing to focus on just now,its too daunting to even think about meeting someone new just now.Take one step at a time so you do not get too overwhelmed with it all,Start by talking to your partner about things,if you can,at least that’s a start.
YES. HELL YES! I know there are many different stories around. I was married, diagnosed in mid 90’s, divorced 2005. Nothing to do with my MS.
Then followed a period of internet dating. I’d moved house, new town, knew no one…
Met my current partner online in 2011. He has kidney disease, I have MS. He was in London, I was in Shropshire. We’ve been together 8 years and finally after searching for a place for @ 4 years, moved in together 2017.
Regarding your health, I’d say time has come to ask for referral to wheelchair services. And social services if you don’t already. From what you say you need social care and theres no shame in admitting, okay I CANT do that anymore and I really need help showering or cleaning or whatever.
I am sorry things arent good for you right now. Yes!! Coming from the other side of things here, my hubby had MS when I met him. But it didnt put me off in the slightest - and I know he had no trouble dating prior to me! It just was never an issue…I honestly think most people see a person and not a disability and if they don’t then they aren’t worth the time anyway. Good Luck to you x
By the way, I don’t think MS has “ruined me”. What am I, a souffle? No that is a wierd way of looking at life. Are disabled people less than normal? Is a life less perfect not still a life? Try and get your head ound that first.
Totally agree… MS has not “ruined” me, it likes to make life difficult but it hasn’t ‘ruined’ me. I am still me, but a slightly different me now - who has to be a bit more organised than I used to be, and less spontaneous. The days of loading camping gear onto the motorbikes, kitting up and then tossing a coin to decide which direction we should take, don’t look like they’ll be happening again… and I can live with that.
I feel it has ruined me. 6 years ago I was the life and soul of every party. Now, I have no friends, no family who want to know, practically shut in, no self esteem or confidence, chronic anxiety, no fun in my life, nothing to look forward to. I might have let this happen but I haven’t had any support from the start and it’s been incredibly difficult. I know it’s pointless but I miss my old life more than anything. I have dreams where I’m running and dancing and I wish I never wake up! I just hate it and I have no idea how anyone gets used to it
I met someone round about the same time as I was diagnosed. She had M.E quite badly for years, so she completely understood the impact of poor health. About 4 years later we were married. Now, several years later, we separated, though I don’t think MS can take the blame. However, despite not living together, we remain very close friends. The journey we’ve been through with my worsening health means we built a very strong friendship.
As reddivine and fracastorius say, I don’t think MS has ruined me either. It’s been a heck of a tough journey in the 16 years since diagnosis, and I’ve had some horrible times in very dark pits. But my life is not over, it’s merely changed direction. And I’ve achieved things I’m proud of that only happened because of MS. For example, I became a member of an NHS committee that reviews and approves applications for research grants. And I’ve even learnt to fly, when I was lucky enough to get a scholarship from a charity called Flying Scholarships for Disabled People (I highly recommend you look into applying - they’re exactly for people like yourself who have lost confidence). I’ve grown a lot, though it’s taken time and many dark nights of the soul. I don’t know how I could have could have forged this life if I wasn’t a Christian. My faith has taken a battering at times, but I’ve no doubt God is walking with me through this.
I think it’d be good to cast your net wider than just looking for a partner. Connecting with people is hugely important. See if your local branch of the MS Society has any groups that meet near you. If not, then start one! Here in Sheffield, one of the MS nurses started a monthly pub social. I’ve made some good friends from that. So maybe speak to a nurse about getting something started. Check the shift.ms website too, to see if there are any others in your area. And see if there are any classes near that you could go to - pilates, art, book clubs, anything (a local library may have notices for things like that), anything where you can meet people, use your brain or body, or learn something.
Yes, life is scary now, and hard. But life does not have to be over.
Hi tingly you are showing classic symptoms of depression. I think you would benefit counselling. MS can go fast if you let it. Your basically let it take over your life.
Hey you can still have a life in a wheelchair people do.
I am so sorry you had no support at the beginning and now you need help. I would talk to your GP and get some counselling.
Your still grieving over who you used to be.
I found it hard to walk when i was living in my big house, now i have moved and less space to move about i am having more energy and pushing myself to walk more. I am really getting there. I bought a light weight rollator, and i even put the rubbish out. Big achievement for me. I have met lots of new people in the sheltered accommodation i am in, and have a giggle even with men never thought i would speak to another one after having such a great life with mine for 28 years, but i can still hold my own.
I try and do something every day NORMAL. it helps.
Your lost and you need to find yourself again. You have kind of given up which is sad in itself. I can feel there is still a bit of you as if there wasnt you would never have come on here to talk about it so your not there yet. You want to get better.
Your legs have you tried some magnesium? Had your B12 checked. Eat well i do, lots of fruit and veg.
Pace yourself, talk to your partner, its like that person isnt even there.
How do they feel?
If your up for a new lease have you thought of sheltered although oops you may be too young for that if you are then you need to try and get in a better place. finding myself a flat downstairs with a lovely view and an area i could sit out was great for me as i dont have so much to look after. I think i could even do more on my own, although i still need care i feel stronger now so i could do more for myself.
DONT LET MS rob you of your life. You can get better and in a better place you just need help to get there. Its worth it honestly i still have a life and MS hasnt ruined me. If anything it SAVED ME. Yep if i hadnt had this disease slow me down i think i would have had a coronary or a stroke as my BP was way off the richter scale and now its normal with tablets. I worked so many hours 60 or 70 i worked as a tutor and developer of qualifications for a small college and had 11 learning centres to deal with and over 54 tutors. If it wasnt for the MS which suddenly stopped me, i think i wouldn’t be here now.
I think you need to talk to your GP and get counselling i really do. xxxxxxxxx Oh on a group on facebook one of the ladies is just getting married she met someone and she has MS quite bad.
P.S. I think you have shut yourself in, and made it too hard for people to help you. Perhaps unknowingly you pushed them away. I would reach out now for your family and friends and just ask them for help.
Tell your family how you really feel.
I cant believe they would turn their backs on you.
I dont know you and i can feel the barriers all around you. STAY AWAY.
Dan what a lovely post. I am glad you had good time with your partner but still remain good friends, you just needed each other for a while now you both became stronger, and will have a lasting friendship.
I thought your post was very positive. Good on your for learning to fly. I say being disabled has its advantages lol. I have met much more nicer people and friends through my MS. Before i got MS i worked so hard i never had time to go anywhere or meet new friends.
I have no idea what god has in store for me, he took away my mum and my hubby, but i feel he still needs me to help someone. I just feel it. I am supporting my two daughters who both have issues and i feel i need to work hard to stay to make sure they are ok when i finally leave to be with my hubby.
Yep so much to do. I have pain all the time, but its part of who i am. xxx
Thank you for a lovely positive perspective of MS and life itself. xxxxxx
As CC says, lovely post Dan. I’m a Christian too and it has helped, tho not been easy. Frustrating, yes when you think, can’t dance much (doesn’t stop me trying) or garden (ditto). You stop hankering for what was and find new paths, new interests. Meet ups is a good place to start finding social networks if you know no-one. But I agree tingly, I think you must be suffering from depression. Take Crazy’s advice please.
I do not have anything to add to what Dan and others have said, but just wanted to say that I am sorry life seems so dark just now, and that I wish you well. Alison
Hi tingly Just a quick message to say the shift.ms website I mentioned are looking for volunteers. This was on their latest newsletter - ‘As always, thank you for all you give to Shift.ms, if you’re interested in a new role or doing something more please let me know - we’re looking for volunteers to help out on the site as well as on social media at the moment. Please get in touch with me (email@example.com) if you want to talk about any opportunities.’ So it could be worth finding out more, having something where you’re contributing could be very beneficial. Dan