Where's she going with this I hear you ask yourself? Well this is what is on my mind today; lately I have been questioning who I am. Not literally of course, not in a " please read my name tag and return me to the mental hospital" kind of not know.
You see, I was recently approached by a student in the medical field who told me that their class was doing a study on MS and could they ask me some questions about what I was going through. For a moment I felt quite special and not in a "I lick windows" sort of way but more like "feel like I'm on Oprah" kind of special.
The questions started and I answered in the most honest way I could. Most of them were quite straight forward and dealt with the practical stuff like diagnosis and how I have been treated in the NHS (can open, worms everywhere!) but one was more personal in a way and this is the one that has stayed with me.
The question was something along the lines of "do you think people look at you differently or have changed how they see you since you have been diagnosed". It was something I hadn't really thought about up to that point but it did make me wonder.
Do people see you differently once you are diagnosed with a chronic illness? I mean, I don't want to be seen as "Karen with MS" or "Karen the sick person". I mean I have always been "Karen, a bit sick in the head" and I can understand that with my sense of humour. My friend Gill calls me "Karen, best boobs in Sandgate" and I am TOTALLY cool with that too (ha ha) but in all seriousness I don't want to be defined by MS. It might be what I have but it is not who I am.I slept quite well again last night (two nights in a row now, woo-hoo!) although have to admit to feeling a bit muzzy this morning from over-indulging in the liquid grapes again. I know, I know, it's bad for me and I need to drink less but hey it was Friday and besides, you can't tell me what to do, you're not my Mum (I bet my Mum will call to tell me off now).
Having said that, even with the self-induced head fog my MS symptoms are definitely milder today. In fact thinking about it, they were milder yesterday too. Does this mean I am going into remission? Do I get my hopes up?
Will I no longer be "Karen with MS"? Will I soon be "Karen, all better now"? Or is this just how this is going to be? It will come and go, some days worse than others? Some days good, some days not so good? Maybe I am "Karen feeling good today, I'll get back to you tomorrow". Perhaps that is all part of learning how to live with any chronic illness, you take one day at a time and celebrate the good days.
Thinking about it, I think I will just see myself as "Karen with MS (and great boobs) taking one day at a time and appreciating my friends, family and life every single day regardless of how I am feeling". Yes, I like that - let's run with that one!
So enough about me, how are YOU?
Karen,
ReplyDeleteI can totally relate with this! When I started walking with a cane I began to think about it. When I needed a walker it was really on my mind. Then I had to walk in front of the highschool basketball crowd to show my support on senior night for my player and I knew that I am truly marked as 'the woman with MS'.
Everyday is an adventure and I'll do my best to stay in great condition so that when a cure is found, I'll be ready!
Linda
Hi Karen,
ReplyDeleteI so relate to this. At first I was so guarded and secretive about my MS because I worried what if people find out and they think less of me or treat me differently? You see prior to developing MS I was the worst at judging people who were less fortunate than myself. Suddenly I felt as if I was getting my comeuppance for being so callous and I realise what a disgracefull sod I must have been. Still plenty of other things to work on now, just quietly.
We don't have any control over developing MS or its relapse rate or its disease course on our bodies anymore than we do over who our parent's are or the nature of our children. But what we do have control over is our self image, self worth, continuing to make the most of our God given talents, and choosing to accept or reject other people's negative opinions of us.
So, I am happy to share my life, my journey with anyone now but MS does not define me and this is definitely not the end of my life. It is a bright beautiful new beginning and I am using it to transform my life for goodness.
I couldn't care less if people see my MS as a big negative. The truth is if you've never had kids you never know the love, joy, and the selfish person that you were before kids. So too if you've never experienced chronic disease you can't possibly know what we are going through so why judge us.
So knock, knock, who's there? Karen with the great knockers... come right in, the water's fine.