Learning to live in tune with my body and my MS
I’ve always been the type of person who struggles to sit down and do nothing. I’m not one for watching Netflix for hours or staying in bed till midday. I work full time, exercise and socialise a lot. But I’ve realised having MS means you need to adjust your life in different ways to stay healthy and happy – so here’s what I’ve learnt so far.
Struggling on after diagnosis
It took about 11 months to reach my diagnosis and about 6 months after my symptoms started for my referral to a neurologist. Throughout that time without knowing what was wrong I just struggled through. I knew I was in pain, I knew I was exhausted, I knew I had optic neuritis and was messing up nearly every single spreadsheet at work but I didn’t know what was wrong. I felt guilty, was I just lazy and unfit? Did I need to exercise more? Why should I rest if there wasn’t anything wrong?
It didn’t help that things had just reopened after the first lockdown in the UK so if I missed any social events I was devastated. I ended up in hospital a few times hooked up to IV steroids and antibiotics because I was just ignoring what my body was telling me.
When I finally got my diagnosis, I was in denial for a few weeks and continued life as normal. But eventually after speaking to family and friends I realised I couldn’t continue and I needed some serious rest. I took 3 and a half months off work and it was the best decision I ever made.
The do’s and don’ts
Obviously with my newfound time off and chronic illness, I started to research anything and everything to do with MS. I had a long wait to see my MS nurse for the first time because of the pandemic and felt a little lost to be honest.
I remember the neurologist telling me not to use ‘doctor google’, but I found myself lost in Facebook groups, different pages with advice on vitamins and unfortunately a lot of negative stories. After that I thought it was best to speak to registered charities with more trustworthy information – I ordered some leaflets but I found those just as overwhelming, I couldn’t believe this was my life now.
My Mum bought me a book about MS that seemed like a good place to start. It advised on diet and vitamins, which is something I’m already clued up on as a vegan. It also advised a plant-based diet could help – great! I was already doing one tiny step, which made me feel a little more positive.
I tried to avoid over researching and I got an MS buddy through Shift.ms, this was helpful as she understood and was further down the line than me and at last things became a little clearer.
Small bottle of energy
A few months later after lots of rest I finally got my appointment with my neurologist again and my MS nurse. I chose my treatment and was happy that things were moving forward.
Naturally the first time my MS nurse came to visit me, I had A LOT of questions for her. But my main one was ‘How do I deal with fatigue?’ I had rested and rested and I was still so tired. Some days even if I just did the hovering I would need to get back in to bed. Then she told me something I’ll never forget, she said “that’s really up to you to control. Imagine most people have this big bottle of energy that refills each day. When you have MS your bottle of energy might be a little smaller, so you need to carefully use this up in small doses throughout the week, rather than running round like mad for one day. It needs to be used in small doses, but you’ll get there.”
From then on I understood it. All I need to do is listen to my body. It’s so simple – your body literally tells you exactly what it wants. If you are aching you need to rest. If you are thirsty you need to drink. If you are hungry you need to eat. It’s that easy. I’m not lazy! I have MS and my body is a little more fragile so I need to give it what it wants and live in tune with it – not fight against it!
Ignoring the haters
I was feeling better; my Copaxone treatment was going well apart from the odd headache and injection sore. I had gone back to work part time and managed to walk 10,000 steps again! On the bad days – I tried to rest as much as possible. I ended up in hospital with an unrelated problem, which set me back a little. But after speaking to my employer they were happy for me to work from home for a while whilst it was resolved.
The most frustrating and hardest thing was to learn not to listen to other people, especially people without MS. Sometimes people would be telling me “Come on! You can do it! You can walk far, it’s easy!” So I did – but then they would tell me “be careful though, you don’t want to over do it. Don’t forget you’ve got MS. You’ll end up in hospital again.” This was so annoying! What did they want me to do?
I’ve now learnt to ignore this and do what I feel comfortable with. I give myself credit for what I can achieve on the good days and it doesn’t matter what anyone else thinks.
I look back now at when I was fighting through the pain and I feel sorry for my body and myself. I went to hospital so many times because I hadn’t rested and it was too late. Now I have learnt that isn’t what life should be like! It’s okay to ask for help and it’s okay to say no. Having MS is not easy and you need to give yourself the self-care you deserve. I can still do everything I want to do but I just have to do it on my terms and my body’s terms.
My name is Sarah and I live in the UK. I have been living with MS for just over a year now. My MS journey started with optic neuritis about 5 years ago and developed into many hospital trips due to strange aches and pains! Steroids, infusions, and injections – I’ve had it all! I'm a student advisor and I love my job. I also love fashion, crocheting and cooking lots of yummy vegan food - I have been vegan for 4 years now, it’s nothing to do with my MS, I just love the environment. Since my diagnosis I have tried to turn it into something positive by raising awareness about MS in the news and on the radio. I also want to support people newly diagnosed with MS and give them hope you can live a great life with MS, you just need to find your own way!