Last reply 5 months ago

So I’ve had my official diagnosis of MS from neurologist of which neither of us were surprised. Had already explained what was expected to my partner and family but everyone seems a lot more taken aback than I excpected. I’ve decided that the best course of action for me is to stay as upbeat as possible, I don’t want to stop anything I’m doing (nothing bad, just my horse and being fairly active) I just think I need to alter the way I do things, slow down etc but I’m getting very mixed signals from those around me. Half don’t believe me, some are behaving like I have a terminal illness and, as I care for my mum, her response was that she feels awkward now me looking after her if I think that she should be looking after me (which I don’t, just trying to explain that I can’t do as much as quickly as I used to). I know that no one can tell me how I feel but I don’t know if I’m being naive or irresponsible just taking whatever tomorrow brings, or not taking it seriously enough. I’m finding ordinary things much harder than I used to but just plodding along. I feel like I’m supposed to be making huge lifestyle changes instead. Any words of wisdom are hugely appreciated!

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5 months ago

@jo_buckland , the only people that understand what having MS means is those people with MS. The rest of the population has an alarming lack of awareness, so say inappropriate things.

We have to live with that.

From what you written, you seem to have a balanced and philosophical outlook. Just live healthily, eat healthily and avoid causes of stress. Let moderation be your friend and listen to your body. Your body will tell you if you need to slow down.

5 months ago

@stumbler thank you!

5 months ago

@jo_buckland- good for you to have a calm and positive approach to all that’s happening for you at the moment. I am in a similar situation and feel as though some friends are just picking up on the LP confirmation and missing the fact that I am still me. I don’t think it’s naive or irresponsible to think about how you want to manage life and pick your own priorities. Go at your own pace, all of the advice on this site is so reassuring and points to us needing to learn about our own symptoms and challenges, and finding out as we go about how to best cope. Good luck and best wishes.


5 months ago

I’m fairly new at this too and I can vouch for @stumbler ‘s wisdom. I think you keep doing you and try not to waste your limited energy on worrying about others. If you have energy, great! Do what you can but I’d recommend starting a tracker, I’m starting to spot some triggers (sleep, stress, illness). None of this is rocket science and those that have lived with this longer are probably rolling their eyes at me but as someone who’s always hurtled at things a million miles an hour and assumed I could just power through I’m finding comfort in learning about myself and maybe being a bit kinder to myself on days where I feel a bit iffy. In terms of friends and family, there’s a difference between thinking it and knowing it. My dad has MS and I was diagnosed two years later and it’s been tough on everyone, although we’re completely different (hello snowflake) those we know and love have had to grieve for the life they thought we’d have. I’m fairly practical in that you never know what could’ve happened, but it is tough when thinking of the future and there are different what ifs to ponder. Keep positive, keep happy, and if people want to put their grief on you about you – kindly direct them to the circles of grief model and encourage them to pass their grief outwards and not direct it back at you as you have some serious, positive living to do. 😘

5 months ago


You covered a few topics so I will give my perspective in point form.

1) MS is new for you but also new for everyone around you; mixed reactions are to be expected. The good news is that you can weed those out who are not good for you going forward. We only have so much time on this planet; invest your time with those who are good for you…

2) Mom is a different story. If her expectation was that she would sit there as you took care of her, she was wrong. All relationships involve give & take; as needed & what one is able to give. MS has altered the future – yet the basic concept is exactly the same.

3) “I don’t know if I’m being naive or irresponsible just taking whatever tomorrow brings, or not taking it seriously enough.”

That is the perfect mindset with dealing with anything while enjoying life. You should post that quote above your bathroom mirror so you see it every morning…

4) A horse? Cool… 😉

5 months ago

Hello @jo_buckland, welcome aboard! Your positive attitude will be your greatest asset. Over the next year or so, you will probably go through different stages within the processing cycle and your views migh shift and change a bit. Learning to listen to your body is a valuable skill, as is adapting lifestyle. Essentially, don’t push yourself or overdo things, eat healthily and make sure you keep any stress to a minimum. This is a difficult and unexpected turn of events for you and your loved ones. This sounds tough, but you can’t really take on other people’s feelings for too long as it will wear you out. The good thing is that you do have family and friends around you, there are so many who are on their own with this thing and who have no support system. So. Roll with it, stay strong, accept whatever help comes your way, and don’t be afraid to feel what you feel, when you feel it x

5 months ago

@jo_buckland getting things across is tedious. The fact is that you can’t tell how it will go and yet. Most people can only imagine something linear. After 26y I have learned to worry less and adopt an attitude of acceptance and defiance. I could get run down by a bus tomorrow so all the MS worry would be for naught.

I try to ensure I only buy non-iron shirts as time is too precious to iron stuff.

Other people will have to get over the uncertainty, don’t burden yourself with their problems. Like ironing, a waste of time.

Engage with the medics, the research, understand why things are or aren’t suggested to you. Learn to ask why they have chosen not to do something as much as why they have. Do not be afraid to ask for second opinions.



5 months ago

Perhaps tell your mum what an understanding neuro said to me at the point of diagnosis: ‘I’m not telling you that you have a terminal illness. You have a chronic condition and it’s up to you to manage it’.

5 months ago

Thank you for all your kind messages, you’ve all helped the most so far, you’re amazing!!!

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