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Naive?

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 expected. 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!

Hi Rupert

Theres no reason why you shouldn’t remain perfectly able bodied and capable of caring for your mum for years to come.

For the first 10 years of my MS I was perfectly able bodied and able to do everything that anyone else could do. Of course, I had relapses when I was less capable, but in general I was fine. After that there was another maybe 5 years when I had deficits but was still OK. And I managed that without the benefit of disease modifying drugs (DMDs) in the main.

It’s only after a major relapse 7 years ago that I became more disabled.

But that needn’t be the case for you. If you have been diagnosed with relapsing remitting MS (85% of people are), then there are now lots of DMDs available. The point of a DMD is to reduce the number and severity of relapses. And relapses are what causes disability. So if you get on the right drug, you may have no relapses.

When you are first diagnosed, you hear the two letters MS and don’t really focus on what that might mean for you. You don’t tend to know the types of MS, so don’t know if you’ve been diagnosed with the relapsing form, or progressive type.

If you’re not sure, ask for the contact details (if you don’t already have them) of your MS nurse. S/he will be able to figure out which kind you’ve been diagnosed with. Once you know that, let us know and we’ll be able to guide you to the most appropriate resources.

But in general, I would say, keep as fit now as you are able. Strong muscles, especially the core, pay dividends later. Eat well, take a high dose vitamin D supplement (get your GP to test your levels,maybe even after you’ve started about 4000iu so you then know if you needed that strength - most of us do). Eat well, drink lots of water, keep your bladder and bowels healthy. And don’t overdo stinting yourself with the things you love. Whether it be nice chocolate, gin or wine, don’t be a martyr to your diet or your MS.

And keep coming on here when you have questions, worries and thoughts. We’re a nice community who will do our best to steer you in the right direction.

Sue

Hello - sorry hear you have been diagnosed with MS. Not one of us knows our tomorrow. Since having MS I feel that I have some sort of inkling as to what my tomorrow might, perhaps, per chance be, but like everyone else I don’t truly know. I have found this helpful, as all I can do is make the most of the day I’m in.

My walking is not at all good and it is limiting. I love walking and exploring and without help this is now impossible. I have succumbed to having a wheelchair. Having said this i’ve still booked two overseas holidays this year. One to Ireland and the other a fairly adventurous 3 week trip to Namibia. I do have a very caring husband, so this is a BIG bonus.

I have not been great at pacing myself, but since attending a fatigue management course I’m a lot better. I tend to break chores down and do a little at a time. I can’t do much housework and if a bit of dust gathers, so what. My 92 year old mum stays with us and is amazing at getting many household chores done. I probably don’t appreciate her enough and need to be more patient. I sometimes find I get verbally frustrated when I can’t do things I want to do. It could be something simple like making a cup of tea when i’m physically tired and in pain.

My husband tends to remind me to accept the help i need, as what’s the point in waiting until you are unable to make use of the help. It took courage to start using a stick and I used to hide it behind me if I saw someone I knew. Silly me! I always use one or two sticks now. So, if you need help, then graciously accept it.

I wish you well as you come to terms with your diagnosis and trust you can work out how to deal with your everyday life.

Sue, you always give such good advice. Just wanted to say thank you.

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