World MS Day 2021: Advice from the MS community 🧡
Today it’s World MS Day. A day to join together, raise awareness and support each other.
The MS community is one that nobody wanted to be a part of, but connecting with it can be a lifeline. Our community helps answer those questions you can’t ask anyone else and holds your hand on days when you need it.
To join in with today's theme of MS Connections, we’ve gathered some advice and words of encouragement from medical experts and other people with MS.
We asked them...
Make use of any and all aids that are available to you to make life easier.
That might be something small like an electric tin opener or shoe horn or something bigger, like a mobility aid or shower chair. Just using something that makes everything that little bit easier makes a big difference to fatigue levels and stress!
Let go of expectations. Of yourself. Of others. Of how your life should unfold. Why? Because almost none of it is going to be what you expect, and that’s ok.
Sometimes my head will want to do a lot more than my body does. Accepting this limitation can be hard and trying to meet unrealistic expectations can lead to feelings of helplessness, guilt and stress. So, it’s important to prioritise well and get to know your limitations.
There is no right or wrong when it comes to your life. Happiness is letting go of what you think your life is supposed to look like and celebrating it for everything that it is.
As a doctor it’s really helpful for me when a patient comes prepared with a short overview of what’s changed since we last saw each other.
It can just be a quick list of any changing symptoms or medication side effects. It means we can quickly work out if there are changes that we need to make.
Dr. Adrian Minh Schumacher - Emilyn MS expert
Write everything down - like everything. It helps me keep my mind free for other things and stops me getting that nagging ‘I’ve forgotten something’ feeling. My kids laugh at ‘the book’ but it means they don’t forget their gym kit.
Melissa - Emilyn community
Take it day by day. I know it's hard, and some days, you feel like hell! Understand that not every day will be the same. Power through the rough moments the best you can
ADVOCATE for yourself! Let your doctors, nurses, physical therapists, occupational therapists, anyone know what you need and want. It’s easy to just agree with what they say or listen when they say you are fine. If you are not fine or your needs are not being met, speak up!
If you're struggling with sleep, keep a sleep diary to have an informed conversation with your specialist. There are 12 things you need to track so they can understand what's happening, and how to help you"
Catherine Siengsukon, MS sleep expert
You have to have rest days. I still have a life that I absolutely love, I just have to live it a little differently. I'm still very sociable, I still work full time, but on those days I have off, I just have to chill.
I stay in my pyjamas, I read, I watch Netflix and that helps me have a relatively normal life the rest of the time.
Managing the expectations of others when you have an illness can be tough to navigate, especially if people cannot see your illness.
For me, communication is the most important thing. Explaining the effects of the illness can help people to understand it, even if they cannot appreciate how it feels. Not everyone will understand, so try to be open and express how you feel when someone is asking too much of you or is maybe judging you in a way that is not helpful.
Find other people who understand. You are not alone in this fight. In the beginning I knew no one with MS and I felt so alone because of it. Connecting with others that truly understand what you are going through, who empathise with your struggles and that can boost you up when you’re down is so vital to your health.
One of my first major MS attacks put me in hospital and the doctors couldn’t work out what I was talking about because I looked fine. It was only through posting in one of the MS Facebook groups that I’m a part of that hundreds of comments flooded in telling me what the symptom was called and I was able to get treated. Social media is your friend.
Tell people what you need. Explain how they can help you. People who love you will want to help - in the same way you want to help those you love
Take the time to put yourself first and do what you have to do to try and make yourself feel better.
That might mean going out on a walk, or having a duvet day. Taking care of your mental health is so important so try and do things to help you feel happy and fulfilled.
The biggest then you can do or say when someone is struggling is to be there for them and just listen! Ask how you can help or if they need anything.
Unfollow all negative groups and accounts! I only follow people on social that I find inspiring and have a positive outlook. Lots of groups are discussing the worst case scenarios and I’ve only been diagnosed for two years and that didn’t help my mental health.
We all know when we get diagnosed with MS what that means for us, and I just take every day as it comes. There’s good in every day, so I try not to worry too much about the future.
You may not have control over your diagnosis, but how you face this challenge is yours to determine. If you look only at the limitations it places on you, then your quality of life will suffer.
Try to focus on your abilities and the positives that remain. This will make sure you are much more prepared to deal with the challenges you may face.
Remember, you are so much more than the label your illness places on you. A diagnosis does not define you and does not take away who you really are. Of course, you may have to make some adjustments, but you may also find new opportunities along the way. You are still you and you are amazing.
Treat this as an opportunity to change your life and to never give up.
For me, receiving the diagnosis of MS was the start of a new and better version of me, but initially I grieved who I once was. I was angry at the world and lost in it.
Once I decided to make the conscious effort to change my mindset, start the research, join as many MS groups as I could and by documenting my experiences through Breaking Barriers, I was able to grow as a person. I was able to start pushing myself to expect more for my life and ensure that I was doing everything that I could to help me become the best version of myself.
I am forgiving for my rough days, determined on my good days and I forced myself to see the good in any situation, to the point that it’s my natural go to now. We can retrain our brains to help us not only heal, but grow as people. I am proud of myself and how far I have come. We all have this fight and you are so much stronger than you realise. You have gotten through everything that you thought you wouldn’t, so be proud of every achievement and allow yourself to thrive
Emilyn's here if you're looking to make connections with other people with MS, or improve how you manage your condition.
It can help you track your symptoms, take medication and connect with other people with MS.