It was nearly four years ago that I was diagnosed with MS. And for me it was rather a shock. Before I started acquiring my weird collection of symptoms (have buzzy feet, seeing two pigeons outside when there was only one…) I had never even heard of MS.
It took rather a long time for me to get my diagnosis, and when I finally did, although there was some physical help available, there seemed to be very little for mental health side of things (I wasn’t offered any at the time). Which resulted in me feeling a bit lost and scared about it all. Dealing with an MS diagnosis can be super difficult, even more so than the physical side sometimes.
It took me a little while to find ways of helping to cope mentally with my diagnosis, but after some time and research I did discover quite a few! And this is a little list of ones that have helped me. 🙂
1. Talk to others
This can be really difficult, especially when it’s sometimes hard even knowing quite how you are feeling, but it’s also super important. Being told you have MS is a lot to take in, and it’s too much to try and deal with on your own. Talking to someone can help to process the situation and make you feel supported. You can talk to someone you know (a friend or family member), or someone you don’t, such as a counsellor. I also found having a little chat to my dog helped a lot too. 🙂
2. Don’t put pressure on yourself
I’m definitely someone who does this! And I think most people do it, whether they have MS or not, but it can be hard to accept that we may not be able to do everything exactly the same as we could before. I definitely didn’t need to sleep as much as I do now! But it’s important to not put added pressure on yourself. You’re doing the best you can, and that’s all that matters.
3. Look after yourself
With MS it is vital to look after yourself, and this goes a long way to helping care for your mental health. Try to get plenty of sleep (at least 8 hours), spend time relaxing, exercising (even if it’s just a little bit), and eating healthy (with the odd treat of course). It’s also vital to listen to your body, and learn how to put yourself first. Don’t feel guilty about taking the odd day out just to do the things that you enjoy. 🙂
4. Find out all about MS
It can be really helpful to find out all about MS. Be careful with going google happy (which I did a lot of), and stick to the main websites, which provide loads of reliable information and support. You can even read about other people’s experiences, and keep up to date with all the latest research.
5. Connect with others
It is great to connect with others who have also been diagnosed with MS. This might be through an online platform (such as Shift MS), a support group near you, or at one of your local MS centres. Having someone else to chat to about all the random symptoms and experiences that come with MS can help you to process the situation, and too also help you know that you are not alone. You might also find that you make some amazing friends along the way. 🙂
6. Find out about what services are available
Take the time to find out what is available. This one can take a while (it took me ages!), but for most of us there are many options in our areas. There are many great online services (which we can all access), MS Therapy Centres, MS meetings, hydrotherapy and counselling, to name a few. All of these can help you when you are first diagnosed, but also throughout your adventures with MS.
7. Do what’s right for you
It’s important to remember that this is your body and your health. Lots of people like to offer advice (and they are only trying to help), but at the end of the day it is you who has been diagnosed. Do what is right for you, and do what makes you happy. 🙂
The important thing when being diagnosed with MS is to remember that you are not alone, and that you will get through this. Being diagnosed with MS is a huge experience, but it’s not the end of the world, and many people go on to lead normal and happy lives with the condition. 🙂
What would be your top tips to someone recently diagnosed with a chronic illness? xxx
Post also published here on the Shift.MS website. 
Great tips, Heather. When I was diagnosed at the MS clinic, all they gave me were the stack of booklets for the MS drugs and told me to pick one. No emotional support, or even recognition of the possibility there might be some emotions to process after such a diagnosis. I’m not bitter at all. 😏 So helpful to have the blogging world to connect with each other and help manage this ugly disease.
All the best to you and yours, and Dizzy of course, for the holidays!
💕 Amanda xo
Same here, it’s not even mentioned. It’s a huge diagnosis but you’re pretty much just sent on your way and left on your own to cope with it. x And I agree, the blogging world makes such a difference. I hope you have a wonderful Christmas and New Year! 🙂 xxx
Only experience can help, you writing guidelines this way surely will be beneficial to others.🙏🙏❤️
Thank you. x And hope you have a wonderful Christmas and New Year! 🙂 xxx
You as well.🎅🌹❤️🙏
Very good post! I was so frightened my breathing changed without me realising it and I felt dizzy all the time, but it wasnt the MS just panic. I also went straight crashing into the menopause because of the shock. Again I thought the heat and insomnia was MS, but it wasnt. A gynaecologist sorted me out with little hormone patches and the temperature went back to normal . It is very easy to see everything as MS when it can just be ordinary medical stuff that can be sorted out.
Shift MS was a wonderful source of help and information and I recommend it highly.
As my symptoms settled down thanks to finding the right MS medication i have used it less, as it is good to try to forget about it when you can.
Best wishes for a peaceful, relaxing Christmas. Cathy x
I went through that too. I always short of breath and it was a struggle just to walk down a corridor at work! But it was just anxiety from it, and not the actual MS itself, took me a while to realise though. x And it is very important to remember that not everything is MS. 🙂 I’m glad the patches helped with the temperature. That’s a much nicer and easier solution. 🙂 xx I hope you have a wonderful Christmas and New Year Cathy! 🙂 Have you got any plans for it? xxx
Reading, tickling cats and when the rain stops – bird watching. I hope you have a similarly peaceful time. X
That all sounds perfect!! 🙂 xxx
I made the mistake of attending a local MS group when I was first diagnosed. Just had Relapsing-Remitting MS back then. Was the only one in the room who could walk! Scared me to death! Went once more, but no change to the group. So didn’t ever go back. This was way back in 1996 when I was still working at my first job in Springfield, MO.
I have heard similar stories from a few people, and when you are first diagnosed it’s just too much. It can feel overwhelming at the beginning. And I think people can forget that not everyone will require walking aids, everyone is different with this. x I hope you have a wonderful Christmas! xxx
You area quite right. Where most organizations are lacking is that our newly diagnosed peers are often not told of proper wheelchairs, universal design homes, and how they can continue to live life fully if they ever do need an assistive device.
It’s true. It does feel as though you are more left to muddle through on your own. I don’t know what I would have done without the internet and from the support of people on here. xxx
Good suggestions Heather. When I was first diagnosed with Systemic Scleroderma I went Goggle mad and it was a big mistake. I learned to stick with the well known organizations. So that is an important point you raise. Best wishes for the holidays to you and Dizzy.
I think we all get tempted in by Google, it’s hard to resist and so easy! But I am much better now. 🙂 Dizzy does sometimes have to remind me not to use it though if I get a new random symptom. 🙂 x Hope you have a wonderful Christmas and New Year Anne! 🙂 xxx
Dizzy is looking after you! 🌷
You have a good attitude Heather and that helps you get through the occasional down days especially as we enter the Winter months, skies are gloomy and bleak looking outside … on a positive note, the days will be getting longer starting December 22nd – that makes all the difference in the world as to how you perceive things.
It really does. I love once we have reached the shortest day and it starts being lighter later again. 🙂 xxx
Oh me too – today the people flock to Stonehenge and celebrate the longest day of the year … you and I will celebrate that we make the slow journey back to longer and SUNNIER and WARMER days!! {{{ }}}
Great tips for MECFS too! I so enjoy your positive and upbeat posts! This is an odd one but I had to learn self compassion to better care for myself. In the beginning I knew I needed to be kinder to myself but I didn’t know how until I read up on self compassion.
I have discovered that one too! I am still having to work on it, but it’s so important and makes such a difference. x I hope you have a wonderful Christmas and New Year! 🙂 xxx
These are the essence of controlling MS by controlling ourselves. We can’t fight it and win. Your list is a huge benefit to someone new and a reminder to us “old timers” of 25 years.
Thank you, I wish I knew all of these when I was first diagnosed, and I think things are slowly improving. I know in my area they now do Newly Diagnosed Days once a year which provide lots of general information. 🙂 But I still think the mental side gets too easily overlooked. xxx
Great advice, Heather! May God bless you and Dizzy always.
Thank you. 🙂 xxx
Heather this really was an amazing post! I wish I had you and your advice when I was diagnosed 18 years ago. All you shared will be SO helpful to anyone that is honored enough to read this! You are truly an inspiration and hold onto your positivity and strength!!
I hope you and Dizzy are doing well and y’all have a wonderful New Year’s! I am hopeful that 2019 will be a great year for all of us!
Thank you so much Alyssa. 🙂 I hope you had a wonderful start to the New Year. 🙂 Did you do anything to see 2019 in? xxx
You are so very welcome! We didn’t do anything to bring in the New Year. My husband’s aunt and uncle were at our house for WAY too many days, but they have finally gone back home. It’s true what they say, more than 3 days is more than enough. Did you and Dizzy do anything to bring the new year in?xx
I had a cold so we had a quite New Year (it’s always quiet, but even quieter than usual). 🙂 Luckily there was plenty of food to keep Dizzy happy, and we found some films to watch. 🙂 xxx
I am so sorry you had a cold Heather. I hope you are feeling better now! Glad Dizzy had plenty of food and I hope she shared with you! What films did y’all watch? A quiet New Year’s is my kind of celebration! xxx
Today is the first day of feeling much better. 🙂 Thank you. x It’s mine too. 🙂 Are you back at work now after the holidays? xxx
I am so glad you are feeling better and really hope you stay that way! I did start back to work last Wednesday, so it was a short week. Next week is back to the same ol thing of working full-time.
Great tips for MECFS too! I so enjoy your positive and upbeat posts! This is an odd one but I had to learn self compassion to better care for myself. In the beginning I knew I needed to be kinder to myself but I didn’t know how until I read up on self compassion
Self compassion is a great one! It’s one I still need to work on, but I might do abit of reading on it too 🙂 Thank you for the reminder about self compassion. xxx
Heather this really was an amazing post! I wish I had you and your advice when I was diagnosed 18 years ago. All you shared will be SO helpful to anyone that is honored enough to read this! You are truly an inspiration and hold onto your positivity and strength!!
Than you so much, that really means alot. I just wish there was more advice out there for people newly diagnosed with any conditions. Instead of it having to be a proper little mission to find stuff out. 🙂 xxx
Enjoyed reading the blog above, really explains everything in detail, the blog is very interesting and effective. Thank you and good luck for the upcoming blogs.
Thank you. 🙂 xxx