Newly diagnosed
Just been diagnosed with multiple sclerosis (MS)? MS Trust is here to help you with practical and relevant information rooted in real life. Let us answer your questions and listen to your concerns with empathy.
When you lose something, it makes you appreciate what you have and make the most of it while you have it
Danielle MacGillivray talks to us about coming to terms with her MS diagnosis and learning to "appreciate the little things" every single day.
When were you diagnosed with MS and how did you come to terms with your diagnosis?
I was diagnosed in February 2016 after becoming paralysed down one side of my body from the chest down. This slowly moved to the other side while I was in hospital. The doctor and nurses were great and kept me very informed with each step of how they were going to help find out what was happening. They kept asking me if I had a stressful moment in my life recently, which I hadn’t, or if I had experienced anything like this before. Once they looked back on my medical record, it was almost like join the dots, and you could see a pattern of events and doctors appointments with various symptoms popping up. A lumbar puncture and MRI confirmed the diagnosis. Once I was told, at first I was in complete shock and had a little panic with a million questions flying around in my head, but after a short while, it turned to feelings of relief after realising what everything was. I wasn’t just exhausted because I was working full time, a single mum and doing regular exercise. I wasn’t just being lazy when I felt I couldn’t get out of bed or lift the weight I knew I could the week before that. Now that I knew what it was, it was now I could start to try and adapt to my body and learn how to get the most out of it.
What are the main symptoms you experience day to day?
Day to day, it’s fatigue mostly, now paired with an underactive thyroid. This can cause weakness and make it hard to concentrate sometimes but understanding when I need to rest has made a real difference. Mindfulness and not letting stress build up has also helped.
I know my limits and refuse to allow myself to fall into the ‘trap’ of taking on more than I know my body can handle
How has being diagnosed with MS changed your outlook on life?
Like most people, when you lose something, it makes you appreciate what you have and make the most of it while you have it. I don’t let stress be a part of my life anymore, I do my best to make sure I don’t over commit my time to anything which means I’m not exhausted for when my son has finished school or at the weekends. It can be hard to say no to others and to things I may want to do myself, but I know my limits and refuse to allow myself to fall into the ‘trap’ of taking on more than I know my body can handle. This is working so far for my family, personal and work time. I’m managing to get everything done, but at a steadier pace. My diagnosis has also given me an understanding of others who suffer from illnesses that cause severe fatigue. Until you experience it, it’s impossible to understand the impact it can have on everything. I now have a huge appreciation for those who manage to keep going when they feel like giving up.
Do you have any advice for others juggling MS and motherhood?
Where possible, take the help. Allow yourself the time to sit down. I found it hard in the beginning to have people do things for me but after some time I realised how much it helped. It allows you more quality time with your child(ren). It’s not easy as the guilt of taking time to yourself can be hard, but in the long run it’s good for everyone that you take those rests.
What do you think is the importance of raising awareness of MS?
It’s huge. People need to have more of an understanding and appreciation of how complex it can be for each person and raising awareness will allow this to happen. People who have no idea what MS is or how it can affect someone can’t be expected to understand it. It also takes so long to diagnose, I’m hoping raising awareness might bump it up the list of suspected illnesses when people go to their doctors with symptoms. This might reduce the disability of some who go undiagnosed for years and increase the access they have to the correct and most effective drugs.
How would you describe MS to somebody who has never heard of it before?
It’s where your immune system attacks your nervous system and your brain finds it hard to send the signals to the correct place which is why I can sometimes walk with a slight limp. I get regular comments on how tired I look – this is usually because I am very tired because my brain and body is working overtime to do small things. Rest and the best diet can get this back to ‘normal’ quite quickly.
What advice would you give to someone facing an MS diagnosis?
Treat MS with respect and it will work with you. If you push yourself too far, MS will push back harder. It’s about learning to understand your body, and this takes time. Once you manage to do this, you’ll realise you can achieve everything you wish to, it just may take a little longer than it would have previously.
What are your hopes for the future?
To live a happy and healthy life with my son, my partner, my family and friends. They mean the world to me. Day to day happiness and its little things can be taken for granted so I want to continue to appreciate these things every day. In the future I would love to grow my family and career but not until I know my body is ready.
