Last reply 8 months ago
Constant change of plans = anxiety

Hi Everyone,

I recently got diagnosed with RRMS and am going to start Lemtrada soon. I am young and at the moment my MS has put all of my ‘constants’ up in the air. My study (I’m a student), career options, where I will be living and the start date of my treatment all keep changing and so there is no certainty of what the immediate future looks like, let alone beginning to process what the future looks like in light of this diagnosis.

Does anyone therefore have any tips or first hand experiences of how they coped with all the uncertainty and the loss of control of decision being made for you? The anxiety is real and I feel like I’m a hamster on a hamster wheel using the little energy that I do have, to chase people regarding sorting out all the admin that comes with the above uncertainties. When actually, I need to process the diagnosis and focus on getting the treatment that I need.

Thanks, Louise!

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stumbler
8 months ago

@studentandms , this is a tough time for you, as it shows the fragility of life. We all make plans, but nobody knows the future and anything can happen to anybody.

A recent diagnosis and a treatment plan of Lemtrada suggest that your medical team are on the ball.

You’re young, so your age is definitely on your side. Academic and career aspirations can still be accomplished, although MS has presently put a spanner in the works for you.

Yes, you do have to take control to make things happen. This is a useful lesson in life. But, once they have happened, your prognosis is good. You should enlist whatever assistance is available to allow you to complete your studies, whether this is extended deadlines or whatever.

You need to keep your anxiety and stress under control. These can be major agitators of MS. Just be reassured that your path to manage your MS is set, so there’s no reason why life can’t continue for you after this unplanned intermission.


grandma
8 months ago

Dear student andms Stumbler is quite right, so sit back, take a deep breath, snd don’t panic , nothing worse than stress for the ms, and he and I are old hands at this. So welcome I’m glad you found us early we’re quite safe, even amusing at times! You say you can’t plan anything but you can, being diagnosed with ms doesn’t mean you have to stop planning. It just means you have to tweak the plans occasionally. You have come to the right place, and don’t stop making those plans. Good Luck😍


studentandms
8 months ago

Thank you to both of you. I will try and keep those stress levels down and focus on what I can do rather than what I can’t


stephz
8 months ago

Hi @studentandms I can highly recommend the Chronically Acdemic network – have a look here: https://chronicallyacademic.org/index.php/en/ and maybe join the group. The closed FB group is great for support around studies, working in academia etc. We are not aimed at students but we do have students with a series of illness and disabilities in the network & the support and knowledge is great. For me (a postdoc) Chronically Academic + shiftMS are my go to networks


studentandms
8 months ago

Thank you @stephz I have joined the page and plan to follow the livestream for the conference today. Really helpful!


vixen
8 months ago

Hi @studentandms, sorry for all this confusion that’s been dumped on you. Just to say, that I have been diagnosed over a year now but am at the point that I am now making big decisions on things I can be in control of, rather than those I can’t. It’s a good feeling, and you will get there too. Takes a while, but hey…….x


aabreu
8 months ago

Wow. Diagnose early and hit it hard. You are in good hands there. Things are looking up for you.


polensara
8 months ago

Hi Louise,

I can only advise you to not to worry about anyhting 🙂
I was 19 years old uni student when I was first diagnosed with this illness. It was a big shock for me and I had no idea what to do.. But I got used to it. it’s been 15 years now and I’m doing ok, having a good life 🙂
Oh there are also good things about MS and one of them is you have to have a healthy lifestyle ( eat healthy food, be careful about your sleeping habit and stress level, do meditation, do exercise, etc.)

Please take care!

Love,
Sarah xx


stephz
8 months ago

Hi @studentandms
Glad you find the Chronically Academic group useful! It’s been a vital source of support and advice for me

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