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watsoncraig
1 week ago

👋 Hi and welcome to the world of Shift. Take note of advice from the likes of @stumbler @vixen @dominics and @itsmewithms they are wise. Ask a question and get a non medical professional answer, one from someone who has experienced or knows of the condition. We try to make light of the thief where we can


tracey1982
1 week ago

Thank you. Yes humour is a good tool


dominics
1 week ago

@watsoncraig – wise is an adjective that I am flattered to be tagged with!

@tracey1982 – right now it will feel like you are drinking from the firehose – so to speak – but it will pass. I don’t want to teach you to suck eggs so if you are doing all the following then ignore me.

Engage with it but try – it is very hard – not to be all MS all the time. Allow your brain to pretend it is a normal world as well. Even if it is for 10 min a day.

Read this brief article by Rachel Horne ( @longboat ) here: https://dominicshadbolt.com/2020/08/19/the-kingdom-of-the-sick/

I scrawled a less elegant view here: bit.ly/ItIsMyCargo

If something sounds too good to be true it usually is.

There are plenty of people willing to relieve you of money by promising different miracle-cures. If there were such a thing you can be sure it wouldn’t be a special secret passed from friend to friend and sold online with no prescription.

Engage with the MS Team. Be liked, be nice, be kind, send them Christmas cards. Be liked and remembered, don’t be a shrinking violet. People naturally do more for people they like. Remember, until you are different you are A. N. Other patient. They’ll make you feel good when talking to you but when the phone goes down you’ll just be a number again. They have loads to deal with.

Get going on a decent DMT. Think about the fact that you are medicating yourself to affect future events. To eliminate or mitigate them. A DMT treats your MS. It is chemical brakes. other drugs treat symptoms of the MS. Only a DMT choice needs to be considered with a far longer horizon.

It will be fine. Really, life will change but it will be fine. We’ve all got each other here.

PS: Get a Disabled Persons Railcard as well – if you have MS then you are entitled. Period. There are no further criteria. Use the magnifying glass here to search it out on this site. All the instructions are there.


tracey1982
1 week ago

Thank you I appreciate it


longboat
1 week ago

I’m so sorry to hear this… but you have come to the right place (see above!) One of the worst things about MS – is feeling alone. Here you never are. Take care, be kind to yourself and as @watsoncraig said there are many years of wisdom here – @stumbler @vixen @dominics and @itsmewithms.
Best – rachel


henrietta
1 week ago

@tracey1982 Welcome to the club! This is a brilliant site for support, I’ve found it really helpful. Also check out the Aaron Boster videos on YouTube if you haven’t already… x


tracey1982
1 week ago

Thanks hun it means alot


vixen
1 week ago

Hey @tracey1982, wow, so I have been branded ‘wise’ above, that’s a first!!! So, welcome to Shift. It’s a great place so get advice, join conversations, float ideas, but mainly, to know and realise that you’re not alone – we’ve all been there! This time post-diagnosis is the time to be really kind to yourself, and impose lots of treats! Most people – myself included – would say it takes a year to get used to things, and to pursue what we call ‘the new normal’, as the idea of having MS usually turns everything upside down.

The basics, are to eat healthily and sleep/rest as much as you need to, not how much you THINK you need to rest – you will become an expert at learning to listen to your body. Don’t smoke, and try to exercise as favourably as possible. By that, I mean don’t be too ambitious or overdo things. Although this might seem strange to say, stress can have a major impact on us and affect us in strange ways. For example, on the odd occasion I’ve had a shock, or become really upset, I find that I am almost immobile when I stand up to walk. This is short-lasting, but shows you how strongly stress and anxiety affects us. You’re obviously quite a way along your journey now, so you are already something of an expert! You’ve probably told people already, and that’s always a personal choice. People often get into a tizz about whether or not to disclose to their employer; no hard/fast rules, but I’d say it’s generally better to in the long run (with a disability, we have the full protection of Employment Law).

Anyway, enough from me; ask any questions, dip in and out as often as you need to. And keep smiling, we’re in this together, and that means a lot xx


tracey1982
1 week ago

Thanks I really do appreciate ppls responses and stories and advice they can give 🙏


paul_hennessy
1 week ago

Hi welcome to shift. ms.
really nice pepole on this forum,it can make you feel better “sometimes ”
Yeah walking is a hard to get your head a round. Stay positive try have a clear mind.. OM☸


stumbler
1 week ago

@tracey1982 , I see you’ve met some of my MS mates now. 😉

You”ll find Shift a bit “”busier” than MS People UK. Shift is global, whereas MS People UK is just national.

Private Messaging (PM) is a tad different too. You can only PM another member once a Friend request has been sent and acknowledged between the two of you.


tracey1982
1 week ago

Thanks hun

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