True Colours

Good Morning Bleeps.

What a glorious day it is today, the sun is shining here in the South East of England and that just makes me feel so much happier. Today has started well, I slept great and was showered, dressed and out of the door by eight.

Some of you have asked me why I didn't blog this weekend and so to you lovely people I would like to explain. When I started this blog I did it for me. I knew that I was going to be going through a lot of crap and I thought it would be a good idea for me to document my journey so that in a year, five years or even ten I would be able to look back and see how far I had come.

Obviously a lot of people could relate to what I was writing due to the number of messages I started to get, Facebook friend requests and blog page views (almost 18,000 in two months). I have always worn my heart on my sleeve, been open and honest. I don't do conflict (really, I can't deal with it) and probably care way too much what people think of me. I still have many friends that I have had since my school days, I confide in them and they share their problems with me too. A lot of people have written to me saying that they loved how honest I am in my writing but I don't see it that way, I am just being me. Why bother to blog if you are going to hide behind a mask and pretend to be something or somebody that you are not? I don't see the point in that at all.

I have met so many lovely people over the last couple of months, some that I know in my heart will be life-long friends. I have had visitors that have left comments on my blog that have made me cry because they are so lovely. I really did (still do most of the time) feel like I am doing something good here, if nothing more than letting others that may be going through similar stuff to see that they are not alone in their struggle.

I was also added to some MS support groups by people who had read what I was going through and all of a sudden a whole new side to Facebook opened up to me. I didn't even realise that there were such a thing as closed support groups. I only ever used Facebook to keep in touch with friends, family and to occasionally stalk the school bullies to see if they had become fat or ugly. Oh come on, don't judge, we've all done it!

I thought I would make new friends, get support and advice and even offer some virtual hugs back in return. One of these groups has been great for that but what I started to notice in some of them was an undercurrent of meanness. Like all of a sudden people wanted to "win" at having MS (which, by the way, is bloody ridiculous because nobody wins with this thing).

Arguments broke out over this treatment or that treatment. Name calling erupted over this diet or that diet. I stayed away from the conflicts but just witnessing it was getting me down. These groups were mostly "closed" groups where you were supposed to feel safe and supported but there was nothing safe feeling about some of them. Some people's masks were slipping and I decided I needed a break from it all, it was all too emotionally consuming.

I was sick of Karen with MS and Karen that feels like crap every day. I was sick of the negativity of some of the groups and so I decided to start my own group that was NOT to be about MS. I wanted somewhere I could go and have fun, share with other ladies (sorry boys, it was a ladies only deal), swap recipes and naughty jokes and just be Karen for a while, like an online "girls night out". I messaged a friend (she has MS) asking her if she wanted to join and she initially said no, she was sick of all the doom and gloom. I told her that I was too and that is why I wanted to make the group, an escape. I promised her fun, laughs and some funny pictures that are just a bit too saucy for my regular Facebook page. She was in!

I made it clear in the group description that this was NOT an MS group although lots of us had the illness. As a newbie to creating groups I didn't add any settings preventing other members from adding their friends and before long other people that I don't know were added to the group. Cool, the more the merrier right? Wrong!

Before long the dialogue started being more MS driven than not. Now don't get me wrong, I even mentioned it myself in there because let's face it, it is part of who were are and it will come up from time to time but it was slowly turning into something I didn't want, another MS group.

I had some private messages from friends who do NOT have MS who had said they didn't feel comfortable joining in as they didn't know what to say. This was the total opposite of what I wanted when I created this space. Since it was ME that created it I did feel that I should be able to lay down the guidelines.

I politely (really, it was polite) asked if we could NOT talk MS and boy was that like "can open, worms everywhere". People took offence, one woman left the group and then I was promptly talked about in another group. I wasn't saying I didn't want to talk about MS ever, in fact when one member finally got her diagnosis we talked about it and I told her I was happy she had finally been heard. I was there for her, I supported her and offered kind words. I just didn't want EVERY conversation to be about it and that what was happening. The backlash was out of control and really very hurtful. Geez ... had I woken up in 1986? Was this High School again??

One person wrote that it was their job to "educate the non MSers". Well, not in this bloody group love! My friends read my blog, they gain understanding through my regular page, this was not the place.

Is it so wrong to want to have somewhere that I can go and just be Karen? Karen who is in love with Phil, Karen who is a mother, Karen who likes wine, Karen who thinks Shermar Moore is a hottie (sorry Phil!), Karen who wants to go back to Tenerife NOW, Karen who thinks she can sing on the Karaoke, Karen who hates laundry and Karen who eats way too much junk food and then moans about gaining weight?  Is it wrong to want just have one little corner of the world where I am NOT Karen who is living with a chronic illness?

I didn't blog all weekend because quite frankly I felt like a wounded animal. Why should I? Why should I open up my feelings and my life if this is what happens when you do? I was accused of being "too sensitive" and maybe I am. Maybe this is the risk when you put yourself "out there". It's funny how some people say things like they "tell it like it is" and they don't care if people do or don't like it. Isnt it about HOW you say things? Like I said a few blogs ago, whatever happened to just being NICE?

One of my friends (non MSer) shared a really special and intimate thing in the group, something that may be considered controversial to some (not to me, I think it is awesome) and one of these members wrote "I'll keep my opinion to myself". Why write that? My friend was hurt and it was unnecessary. Why do people think it is OK to be so abbrasive just because it is via a keyboard and not face-to-face. If they are like this face-to-face then I wonder how many friends they have. I am guessing not many!

So I closed the group down and I left most of the MS groups that I had been added to. I don't need that in my life. I am dealing with feeling like crap, a slow medical system that keep messing me about and the actual stress of living with this invisible monster. I need to surround myself with good people and not people who will drag me down when I am already down enough.

It's funny because I was talking about this to someone and my 12 year old must have overheard the conversation because she asked me if I know these people. I said no, not in person and she said "so why did you add them on Facebook, you always tell me to not add people I don't know on Facebook because you don't know who they are really". Out of the mouths of babes!

I thought about closing down my Facebook, locking down the comments section of this page and even deleting my Twitter but then I thought about people that I have met via this (too many to mention but you know who you are) and decided just to hold my head high and carry on. I know I have a good heart, even if it is too soft at times. I feel pretty good about who I am as a person and it is time to brush off the "Mean Girls" and grow a thicker skin.

So enough about me, how are YOU?