12 Tips for the Newly-Diagnosed

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Talking about my MS diagnosis the other day led me to thinking about how confusing my first year was. Not only was I trying to get used to the idea that I had a life long condition, but lots was happening in all areas of my life.

A couple of months before my diagnosis, I had just got married. A few months after my diagnosis, I was made redundant from a job I loved. People forget that life goes on, even though when you receive your diagnosis time seems to slow down. You enter a haze, just as you do when you fall or have an accident.

I was thinking about what I would tell someone I mentor about being new to this world; I hope it helps you too.

  1. It's tempting to read up on your MS. If you're inclined to doing this, stick to reputable sites. By this, I mean ones specifically related to MS, e.g. MS Society, MS Trust, etc.
  2. If the above isn't enough, then join online forums. There are lots of forums out there and the majority are really informative. If you start a DMD, there are generally Facebook pages for these too. There is something which connects us all and there is an innate need to help each other.
  3. Everyone suddenly gains a medical degree and gives you lots of advice. Usually, you've either tried it or it's completely insane!
  4. Very well meaning and well-intentioned family and friends will send you an article about a cure. There is no cure (yet) so practise 'thank you, that's very kind' and then file (a.k.a. bin) it.
  5. Don't feel obliged to explain yourself. There are very few people to whom you need to do this.
  6. You'll see your neurologist and MS nurse separately, probably once a year. In the meantime, make notes of symptoms, dates, what might have triggered things. Also have a think of questions you'd like to ask them. They don't have very long with you, so it helps you get what you need out of the conversation.
  7. If you don't have an MS nurse, find out where the nearest one is. Even if you don't see them, it would be handy to communicate occasionally by email or phone, if only to ask them if something is a symptom. Where there is a shortage, use the MS Society and MS Trust helplines who are really helpful.
  8. If you're struggling physically and mentally, pace yourself. My first MS nurse was very good at telling me off and reminding me that I'm not super-human. The only way to kick MS arse is to look after yourself.
  9. Don't be put off by the good news stories. It's seems an odd thing to say given that they are designed to be inspiring, however it can feel overwhelming when you're having a hard time and there is an expectation that you can achieve x and y.
  10. If you're having a hard time because of the MS, seek help from your GP. There's no shame in it. Everyone goes through a blip and may be this is yours.
  11. What incentivises you? Whatever that may be, make sure it's in the diary fairly regularly so that you have something to work toward.
  12.  Give yourself a break. Go on. I mean it both in terms of a rest and relieving any burden you might have. This is your new normal, and it will change from time to time. You can adapt. You've got this!
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