Toongabbie, New South Wales
Rachael was diagnosed with MS in July 2014 at the age of 33. She works full time, and also runs her own side business. She is married to Matt and they have two young children, Liam (age 7) and Rylee (age 4).
The problem with MS: It is so hard to diagnose
I always knew there was something wrong. I have lost my vision twice, and my medical history is full of unexplained incidents that left me feeling not quite right.
But I now know that my first MS episode was at 21, around 13 years ago. I didn’t pay much attention at the time – I was young and otherwise healthy, and with the confidence of youth I thought it would just go away. It did, and I forgot about it.
Looking back, I know it was a classic first MS episode. I had taken on a new management role at work and I was quite stressed. Out of the blue, one day my vision started to blur. I had never had a problem with my sight before. So I went to a doctor, who sent me to a specialist. The specialist sent me to hospital. The hospital did every test imaginable, including (as I later found out) tests for MS. But they diagnosed me with optic neuritis and treated me with intravenous steroids. My vision returned within two weeks, and I moved on with my life.
My second episode occurred in late 2006, six months before my wedding. I was at work, and once again I was stressed. This time I had pins and needles on my tongue. After about half an hour I went to the bathroom to look, only to find I was unable to open my mouth and my face had dropped. It happened that quickly. I was taken to a medical clinic, and they diagnosed me with Bell’s Palsy. I then went to my GP who confirmed the diagnosis. I suppose the diagnosis made sense: I remember having trouble with my tongue the night before, when I had been at a family celebration and I had bitten my tongue hard but did not feel it. I was treated with oral steroids, and my partner gave me an acupuncture type treatment suggested by my GP.
Despite two episodes that are in retrospect evidence of MS, I was not properly diagnosed until my third episode in July 2014, when I lost the vision in my left eye. Again, I think it was stress-related. I was working from home three days a week to care for my two children and avoid the three-hour return trip between work and home. My husband starts work at 5am, so this was important for our family. But my work needed me back in the office full time, and I knew I had to go back for financial reasons. I started panicking about how I would manage.
A few weeks later, I first noticed blurred vision and a sharp pain in my left eye after a hot shower. I now know that MS symptoms are worsened in extreme heat or cold. This gradually got worse over a few weeks. I went to an optometrist, and although he prescribed me glasses he suggested it could be MS. He told me to go back after a week. But after four days wearing the glasses I saw my GP, who referred me straight to an eye specialist. The eye specialist said my vision was perfect, but he could see my optic nerve was inflamed… and said it could be MS. He referred me to a neurologist at the MS Clinic in Westmead Hospital.
I remember sitting in the neurologist’s room. The question hung in the air: I could have MS. My husband didn’t want it to be MS, my mother didn’t want it, and nor did I. But when the neurologist confirmed it was MS, I was ready. At that point, the diagnosis was a relief. My health history was random and I had always suspected there a unifying underlying cause. So unfortunately, the diagnosis made sense to me.
But it was a shock: MS is life long. Once you have it, you just have to deal with it.
I felt ok that day, but I lost it the next night. It was just so much to deal with. My husband was (and is) supportive and accepting. I am very lucky... Some partners get scared.
Now that I have MS, I have found a couple of acquaintances that have it too. I find it helps to talk to them about MS.
Lesson learned: MS and stress do not mix
I look after myself these days. I know when I need to take a break and I pay attention. And if my symptoms continue, I do something straight away. That is how I manage my MS: I listen to my body.
I am not sure if I can say the same for my medication. I sometimes think I feel worse from it than the MS itself. Immediately after I was diagnosed I started Tecfidera, which is two tablets a day. I wanted the medication as they said my relapse rate would be lower. But I developed a new lesion after one year, meaning my disease was still progressing. So I started the process to switch to Tsyabri, which is an infusion at the hospital every month. I love it. It is my relaxation day, I just sit and play on my phone or read a book for the couple of hours.
But I wonder if I need the medication. I am still taking it because it is the right thing to do, but the question has entered my mind. My next MRI will be in January 2016, and I am hoping for no new lesions. But I am not so scared of relapses anymore.
When I was first diagnosed I was convinced a relapse would happen on the train and I would fall on the train tracks and die… Now having a relapse – even losing my vision – isn’t as scary as I first thought. Still, MS does get me sometimes. I had my fourth episode in late July 2014. It was the result of extreme stress, and shows just how much MS can interfere with your life on hold when it is least wanted.
In early July 2014, my husband and daughter were involved in a serious car accident – both ended up in different hospitals after someone drove into them in a head on car accident. I was on the way home from work my sister-in-law called call with the news that my husband and daughter had been in an accident. That hour home on the train was excruciating. Nobody could tell me anything. I hope to never be in that position again. I remember getting off the train with my legs feeling like jelly. I ran to the hospital but I didn’t know where I was going… Luckily my sister-in-law picked me up. I was a mess. I stayed overnight with my daughter, and my sister-in-law stayed with my husband (who was discharged at 2am the following morning). I later found out that the police and the ambulance at the scene couldn’t believe my husband and daughter even got out of the car, the accident was that bad. Strangely, that makes me relieved… I wasn’t so worried and stressed without reason.
But a few weeks after the accident my toes and feet became numb. Within a day I had trouble walking. I called my neurologist, who I had seen the week before for my standard six monthly appointment (which I passed with flying colours). I told him everything that had happened, including the car accident. He told me to come in and see him again. When he performed the physical exam I failed the standard tests – I couldn’t feel the vibrating tong anywhere on my body except for on my sternum. I was walking like a 90-year-old lady, and not in a position to care for either my daughter or husband. I started the intravenous steroids that day.
Matt was supportive, even though he was still recovering. He let me do what I needed to do to get better. By that time he was over the worst of his bruising, but he was still tender and had pain. Having the kids made recovery for us both hard – we were not able to lift them or play with them like usual.
Still, I have a lot to be thankful for. My neurologist is fantastic. I can call his receptionist and tell her what is going on, and he calls me back if it could be MS related. He makes the time. And if I have to see him, he never makes me feel like I am butting in on his time. He tells me what I need to know, but never enough to frighten me. Every time I ask him how many lesions I have, he tells me that I am average. That makes me feel good: having the ‘average’ type of MS feels like a good place to be!
Working and raising kids: MS makes it complicated
At the moment I work full time as a help desk consultant. I have been with the same company for almost 16 years and they are very supportive. I told them as soon as I was diagnosed, and they said they would help with whatever I need. They always have. And it means so much to me: it makes me feel normal. I have also started up a side business in an attempt to cut back on my daily travel. At the moment, I spend three hours a day travelling to and from work. It is tiring. If that works, I can cut back a day or two and continue with my side business.
Even on bad days, I can’t just throw my arms up and stop whatever I am doing. I have to be there for my children. And so since my diagnosis, we have decided not to have any more children. I have two perfectly healthy children and I would hate for a third to make me sick or increase my relapse rate, meaning I would not be able to look after them. I love children, but knowing what MS may bring means we will stick with just two. I often ask myself if I knew I had MS would I have had my children… and I can honestly say that I would have. Just because I have MS doesn’t mean they will. MS chose me. But I would hate for it to choose one of my kids… I’m not sure that I could manage that.
The importance of tolerance and understanding: Using MS as a life lesson
My kids are my reason to keep going. Last year we did the MS Walk and Fun Run, and they saw people at all stages of the disease. I felt it was important that we did it together, as they are beginning to understand what MS means.
I try to stay positive. The kids will grow up with my reaction to it, so I am determined to set an example. They know they can ask me questions at anytime. As soon as you say to someone you have MS, well… often the understanding isn’t great. So I tell my son ‘mummy has MS, but I am normal. I am just like any other mum’. They are both supportive. MS doesn't frighten them.
I haven’t explained to the kids where MS could go, as there is no need yet. But my son is almost old enough and if I need to I will tell him more.
I am trying to teach them tolerance. Lots of people have problems, but it doesn’t mean they shouldn’t be treated with respect.
My sister is a personal trainer and she did a case study of my MS. I work out with her and we exercise, so she keeps an eye on me and knows what to look for. My brothers don’t want to talk about it much, but they do ask how I am. My eldest brother promised to call more often and I laughed. I told him ‘I’m not dying, I just have MS’.
MS hasn’t had a huge impact on my life yet. But I am open to whatever I have to do in the future. I just want to be around for my kids. If I end up in a wheelchair, that is fine as long as it means I am here for them. I think it could be a lot worse – I haven’t been given only a year to live.
The thing I find hard is that people are frightened of the idea of MS. It frightens me too, but I am living it. I know how I feel, and I know I am ok.
My mum thinks I do too much and that I should rest more. She wants me to give up work, stay at home and hire a cleaner. But I am not that type of person. She can overreact sometimes, but she is getting used to my MS.
I am just going to keep going until I can’t. I haven’t given up working – I don’t want to stop and for things to change. As long as things keep working, I will continue doing what I am doing.
I am a positive person, and MS won’t change that. I haven’t done anything wrong, it is just that MS chose me.