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Reasons to keep on going

Hi everyone

I’m 37 and I have had RRMS diagnosed for 4 years now and I’m bloody bored of it (at best). I’m in a fortunate position to many - I own my own house, I have a “good job” (part time). I no longer need aids to walk although fatigue blights me and my downstairs regions don’t work at all so am constantly fearful of losing continence. I also am lucky that i have supportive friends and family.

I was in a long term (9+ years) relationship when I was diagnosed and I left said relationship as she had issues of her own (diabetes and was not looking after it/herself) and I couldn’t cope living where we did (London) any more.

I’ve been single for over 3 years now and I’m massively lonely - I’ve not had a relationship in that time (despite me trying hard on dating websites/socials etc) and it’s really getting to me. When I was a child I was told (by the media/society) that when I grow up I will have a fulfilling relationship, children and a satisfying job - I don’t have any of those things (imo).

I don’t think that I’m depressed at the moment but I do feel full of existential angst. What is the point? I don’t have any of the things my brain wants me to have nor can I see a way to gaining such things. My/our condition is only going to deteriorate so what on earth do I have to live for?

I’m not on suicide watch - I talk about this quite openly with my friends (talking about suicide does not make it more likely to happen, if anything it’s the other way round) and if I were to go quiet I told them that’s when they should be concerned! I simply don’t see the point so have been researching Dignitas today…

I’m sorry to vent however I know that you lot will get me and also may have some helpful strategies in dealing with such issues.

Thank you,
Ed

“I’ve been single for over 3 years now and I’m massively lonely - I’ve not had a relationship in that time (despite me trying hard on dating websites/socials etc) and it’s really getting to me. When I was a child I was told (by the media/society) that when I grow up I will have a fulfilling relationship, children and a satisfying job - I don’t have any of those things (imo).”

Firstly, what are you doing listening to the media and society? You’d don’t have to live to their norms or expectations! bit of headology : get yourself straight first, what are your interests, likes, dislikes, hobbies? Consider yourself as a rounded individual.

2nd, don’t give up on the dating but focus on friendship first. I went on the net after a divorce and met my partner online. He also has disabilities but we’ve been a couple 7 yrs and moved in together 2017. So hang on in there. You meet a load of doozies and dorks before you meet the right one. Try Meet up for similar interest groups…we joined the local 40 plus group, cuz we moved and don’t know may ppl.

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Hello Ed

I didn’t actually know I already had MS when I met my husband. It was diagnosed 6 months later. So I can’t tell you what it’s like to meet someone when you already have MS diagnosed.

But I would say it’s not impossible. Many, many people fall in like/love with the person and can work around the reality of MS / disability. Certainly my husband had the opportunity to run a mile a few years into our relationship and chose not to (not that I was being kind and unselfish, I thought I would be better off on my own, I was wrong!)

Feeling utterly naffed off with MS is not unusual. It’s crap. (And how many times do I say/write that each week?) Knowing there might be a ‘get out clause’ (ie Dignitas and the like) is a good safety net I think. It’s certainly been in my thoughts over the years. One thing I have done is arrange a so called ‘living will’, aka Advance Directive. So if there’s ever a question of ‘switch off machine or keep me hanging around’ (like left over sprouts), my wishes are known, and spoken about with my husband, mother and friends, plus a copy sent to my GP. I personally agree that talking about end of life matters with people important in my life is a positive step. It certainly doesn’t make me feel more likely to end it all. (Just now, I like to keep that door ajar if not wide open!)

But you might feel a bit more positive if you sorted out your ‘downstairs area’. If it’s a matter of bladder incontinence, you could speak to the local bladder and bowel service about drugs and / or Botox and / or ISC. If it’s faecal incontinence, again, talk to the bladder and bowel service and see what they can suggest. Possibly a system like Peristeen or Qufora might help. If it’s ED, your urology nurses can help with that, there’s loads of methods of helping ones ‘gentleman’s area’ out these days.

People always used to talk about hobbies and evening courses as methods of meeting new friends / possible partners. That’s still an option as well as dating websites. Sometimes it’s just a matter of widening your social group and staying open to making new friends that helps.

Or of course, singles holidays can be quite a good way to make new friends. I actually met my husband on a ‘food and wine’ singles holiday in Italy. It wasn’t anything like a ‘dating’ type thing. Truly, it was the best holiday I’ve ever had; I have never laughed so much in my life. Not only did I meet my husband on that holiday, I met probably the best friend I’ve ever had, plus several other people we are still in touch with and still going on holidays with.

So there are ways and means of changing the pattern of your days, to make life more fun and interesting. To get around some aspects of your MS that are a trial to live with, and maybe meet someone you want to spend your time with.

Sue

We’re old enough to take what we read in the papers with a pinch of salt, but we are social animals, and it is less easy to shrug off the messages we hear (or think we hear) from the tribe. It takes a strong-minded soul to pay no attention, or even to ask ourselves how much of it is real - what people around us really think and feel - and how much is self-generated inside ourselves. But paying no attention to the socially-constructed notion of what ‘success’ looks like is the only thing that makes any sense at all, or so it seems to me. This applies whether you have MS or not. It’s just that having MS makes it more obvious, a bit earlier.

Alison