I don’t feel like I can really talk about living with MS without first explaining what it actually is.
Multiple Sclerosis is an auto-immune disease that affects the myelin in the brain and spinal cord.
More simply my body is attacking itself and there is no known cause and no known cure.
The type of MS I have is called relapsing-remitting which basically means I am ok for the majority of the time and have periods of time where I will experience relapses. During these relapses my ongoing symptoms may flare up and over time I’ll develop new symptoms as more and more lesions appear on my brain and spinal cord.
An Invisible illness
MS is considered to be an invisible illness. This is because a huge amount of the symptoms you can’t see. There are some ignorant people in this world that think because you don’t look sick then you can’t be.
It’s different for everyone but I personally get pins & needles in my legs, balance issues, heat sensitivity, problems with my grip and the biggest one for me is fatigue.
And I’m not talking just feeling tired.
It’s hard to explain but essentially I can have a full 8 hours sleep (not an easy task with a toddler!) and still wake up with zero energy feeling completely exhausted. I can only liken it to the sleep deprivation you feel with a newborn.
Because I was diagnosed the same year I got pregnant I didn’t have much time living with MS before becoming a Mum. So I can only really talk about juggling MS with motherhood as it all took place at the same time for me.
It really used to bother me that if I had a day where I didn’t clean or do the washing or even make it out of the house then I was failing at motherhood. Like I didn’t have it together and I wasn’t coping.
Two years in I’m trying to give myself a bit of a break. It isn’t my fault that I have MS. Some days you just have to do whatever it takes to make it through in one piece. And that’s ok. Some days I honestly couldn’t tell you if my fatigue was playing up or I was just tired due to raising my daughter.
There is a process of grief attached to an incurable disease.
My consultant was very matter of fact. I felt at the time he was judging me for getting upset when he confirmed the diagnosis. I remember him saying “we have learnt more about MS in the last 5 years than in the last 150 so I am confident of a cure in your lifetime.”
He said it as if I shouldn’t be worried – as if I should just get on as normal.
But that isn’t the way I work.
I said before I’m a planner. I’m also a natural worrier. So instantly I worried for a life I felt I could no longer plan for.
I was diagnosed in the February, due to get married that August. I tried to call off the wedding. I wanted to give Ash the option to walk away. I was so mad at him because he dismissed my concerns as if they were nothing. I thought he was in denial. I thought he didn’t really understand the implications of what this meant for our future.
He said to me that when he asked me to marry him he already felt like he had committed to the vows we were going to take. In sickness & in health. If this was vice versa would I walk away? Absolutely not. So why did I have such little faith in him to stick with me through whatever life throws at us? I guess it’s because I wanted more for him. I didn’t want him to start married life with a broken wife.
The truth is we are all a bit broken.
No one is perfect.
No one comes without baggage.
The ups and downs in life are what makes us who we are. I feel more empowered now to embrace that and not let it define me but allow it to be part of my story.
Some people cope by pretending it isn’t happening. Some people allow it to consume them. Some people use it as an excuse.
I don’t hide the fact I have MS from anyone because for me it’s just a part of who I am. I can’t change it but I can be honest about how it impacts my life in the hope that my honesty might help someone else who could be struggling with similar issues.
Part of my coping technique is to allow myself to feel sad and angry and down when life gets a little overwhelming – but just for that day. I get it all out of my system then the next day I get up and remind myself that I’m so lucky to have such amazing friends and family around me – I have a better support network than most people I know and there isn’t anything I can’t face with them at my side.
They help me to pick myself back up.
They help me to fight like a girl.