An Outsider View: Living With MS

This post is from my little brother's blog, Life of a Stage Gremlin, which he very kindly wrote for me:

I was asked by my sister to do a post for her blog (I Am Not MS) on what it is like having a sister and mum both living Multiple Sclerosis (MS). I was asked to do this a little while ago, so it may be a bit late.. but here it is:

I can't remember exactly how long ago my mum was diagnosed with MS, I think I must have been in year 3 or 4, so that would make me 7 or 8 years old. At first I didn't really know the impact of it, other than my mum was ill and it meant that she couldn't do as much as she used to. She couldn't walk, or drive or even work. There were a few books that I was given to help me understand, and now at the age of 16, I can't remember what most of them said, but one thing I did remember. It's like getting a kink in a hosepipe, so the water can't flow through it - now I know more about the symptoms of MS and how they affect the persons body, I see how the metaphor works. MS attacks the nervous systems, meaning that the signal going from your break doesn't get to the part of the body that you want to do something. 

Now almost 10 years later, I can look back to see how much my life has changed because my dad has had to take up all the slack, he has to work full time still, he has to cook every night, do all the shopping at so forth. My mum just doesn't have the energy that she used to, she can't do anywhere as much as she used to, which is saddening because I know how much she used to do for everyone. Now she sometimes goes out, but has to get a lift from my dad or someone else, otherwise she tends to sit in front of the computer, because there's not much else she can do around the house and she can't just go out for a walk or a drive. 

 It also frustrates me knowing that my mum used to work hard and was in a well respected job, and the government are hardly giving her anything for the fact she had to give up her job and can't go out, and even to get that she had to fight for it because my dad 'earns to much' so she isn't entitled to get anything.

My sister was diagnosed with MS 6 years ago when she was 17, making me 10 years old. By the time I was 10 I knew more about MS and how it affected different people and that no case of MS is the same, that there are some things that can help the symptoms allowing people to try and continue with their day to day lives just people slowed down by it every so often. Finding out that my sister had got sent home from work one day because of double vision and numbness was a bit of a blow to me, and then later finding out that she also had been diagnosed with MS wasn't a nice thing to hear. What it was nice to know was that her case wasn't as bad as my mum's meaning that she could still continue with her day to day life. Looking at where she has got to day,even with MS trying to hold her back, it shows that she hasn't let it. I know she has days when she doesn't want to get out of bed, or just doesn't feel right, but she managed to go to college and then university. I don't think many people would have got as far as her if they were in her position. 

One thing I know has made an impact on me is that I can't really remember what my mum used to be like before she was diagnosed with MS. And there have been some changes that I've had to make so that I can help my mum, but I can deal with that. I don't think of my mum and sister as having MS, I just think of them as my mum and my sister. I know there's things that they can't do because of it, and I have that thrown in my face everyday. To be honest I couldn't give a sh*t that they both have MS, I love them to pieces and they are still caring, they are no less now than before they were diagnosed. They are just my family.