‘It was a very quick process — from hospitalisation to diagnosis was essentially four days. I am fortunate in some ways that it was all so quick, so I could be treated straight away, but it also meant there was a big adjustment, given it was so sudden,’ Melissa says.
Melissa was diagnosed with Relapsing Remitting MS in January 2023. She is working to complete her psychology internship, requiring an extension on what is usually a two-year program.
‘MS has changed what I can and cannot do to complete my internship. I have reduced my working days from four to two days and reduced my client load as I am battling with MS fatigue, which triggers cognitive symptoms.
‘It has been challenging for me to complete a lot of the internship requirements, which includes clinical supervision, professional development once a month all day, assignments and reports to do as well as passing the national psychology exam. I’m just in the process of applying for special consideration for that, as it takes three and a half hours and I will need to take a break midway.
‘My internship and my work are very much centred around my symptom management.
‘Anything that requires a sustained mental load I can only handle for about two or two and a half hours, which then leads to other symptoms like dizziness, blurry vision, loss of balance and coordination and, cognitively, loss of concentration, attention to detail, difficulty recalling things and comprehending information.’
Finding a balance
Melissa says she is gradually finding a balance with her MS, as she adjusts to her diagnosis and works to find the right treatments for her.
‘Every day for me is just a choice about where I put my energy. I don’t want to shy away from showing how horrible MS can be and that after I engage in activities (social, exercise, work etc.), I always need to plan time to rest and recover. This is the ‘price’ I pay with MS, but I’m willing to pay the price if it means I get to do the things that are important to me.
‘I was very fit and healthy and active prior to my diagnosis and I’ve had to reduce the intensity and frequency of my exercise, which has been very challenging for me. I’ve had to change the way I interact socially. I only do one thing on the weekends now and if it’s an evening thing I will need to rest during the day.’
For Melissa, it’s all about celebrating the milestones, big and small, in her MS journey.
‘I was on a medication which enquired monthly infusions in hospital, but I have since switched to self-administered medication. I recently had my last three-hour visit to hospital, which was a big moment for me. As much as I tried to normalise my hospital visits, they were also a reminder to me of the adjustments I would need to make to my life now that I have MS.’
‘It’s about being able to reframe where I am and pull myself out of those low points and being clear about what I can be grateful for. When I can be with my clients or socialise with friends or even reaching the end of my hospital visits — it’s a win.
‘I have to remember that I’m still not stable. I can make errors in judgement and go over my limits and then may need to spend three days in bed. But those incidents are getting fewer and further between, as I learn to manage my condition better.
‘I am expected to stabilise by the end of the year, but my treatment team thinks it will take another year or two after that before I get back to where I was before diagnosis,’ Melissa says.
‘It’s so important to keep letting life and love in, at a time when you need it most. Being able to share the load with others and to manage their expectations. To say to family and friends, I may say yes to something but on the day, I may have to pull out.’
A steep learning curve
Researching and reaching out for support helped Melissa to adjust in those early days.
‘What worked for me initially was to educate myself about MS by asking trusted sources like my treatment team, so you can be steered in the right direction.
‘Making sure I did my own research using credible sources and my treatment team and for my family and friends to educate themselves about what MS is, including what my medication may do to my body.
‘I would also say lean on your support network. It makes it easier to cope with the challenges that come with MS. Also, discuss your condition with work, so a plan can be developed that is suitable for you.
‘I have come to accept my diagnosis but there is still a long road ahead, as I’m not used to having limitations on what I can do. I rarely got sick and if I did I would bounce back really quickly.
‘But I am so grateful to have the functionality I do. It’s hard of course when you have bad days but I am constantly learning about how to manage my MS.
Melissa says the hardest thing can be letting go of what you expected your life to look like and readjusting to your new normal after diagnosis.
‘It can be about understanding there is process of grieving, as there is a loss attached to this. I grieved over who I was and the life I had before and what I thought the future would be.
‘My husband and I are having to learn to shift the goal posts and rethink what it is we were hoping to do/achieve over the next few years,’ Melissa says.
‘MS Plus has been an invaluable resource for me. Also hearing others’ stories has helped normalise the condition – you see what people are going through it’s really important to know you’re not alone and you can make it to the other side.
‘To see others progress, improve and get back to a fuller active life gives me hope.’
