The Power of Politics

I started blogging was because of my MS. I needed somewhere to document and let go. Somewhere I knew it would always remain.

Before starting my blog, I read about how free and honest you can be. Its basically your place to do and say whatever the hell you like! 

No rules or people dictating what you can and cannot do.

No cliques or ‘school like’ mentality.

This was a lie.

Although what you post is still entirely up to you, the politics is really amazing.

People seem to define themselves on traffic and back-links, like having more followers makes you better and higher than someone else.

This just is not true, other things need to be taken into account, like content and how long the blog has been running, just because someone has high stats doesn’t give them the right to judge another blog or whether or not they should be doing product reviews and such like.

I like belonging to a community, I love the friends I have made and the people I have met and I refuse to let ‘stats’ define me or my blog in anyway.

People need to loosen up and let others do what they do, we are all different after all.

I know a ‘big’ blogger in real life, we don’t get on, we are simply both to blame and when I started this blog she tried to scare me away. Our views and opinions of each other should make no difference to other people. I do not wish to be judged just because some lady from the other side of town doesn’t see eye to eye with me.

That would be bias and childish.

I sometimes think people let their blog, start to define who they are, we should all relax and get back to doing what we love. Writing what we choose to write about.

One of my very close friends writes a blog and I love how it has not changed who she really is, I admire this.

I hate that sometimes, it feels like one big popularity contest.

I am done ranting, all views are welcome.

Here comes the future…

Today I saw my neurologist.

Today was the day that would decide my future, and that it did.

I got to see my brain (yes its amazing, truly) I saw all the ‘activity’ which is a very odd feeling, seeing something that in a way you feel but not really. The lack of control is also scary.

Then I got to see my face from the front, under my skin. Also incredible, if a little creepy! The radiologist had made a comment on how my optic neuritis hd got worse.

I knew this.

This made my recent eye test all the more pointless. I had a low visual assessment at the hospital as I have complicated eyes. He gave me a prescription for two pairs of glasses, neither of which do anything as my sight differs from each day, so the likelihood of it being the same as it was that day is like, 10%. Pointless.

I was given my options. Then the percentage of each treatments effectiveness.

I made my choice.

Tysabri.

A monthly infusion, a fairly new thing, also one reserved for people who have more activity, like myself.

Special I guess?

It comes with its own complicated risks, which is long winded and I am too tired.

I need a blood test to test for this virus thing, my blood will be shipped to Denmark! So although I have never been abroad, parts of me have!

Then if I have this dormant virus its up too me whether I still go ahead. Which I will.

I will ignore the fact I heard the word, death. I will be fine.

So that’s the story, just hope it happens fast so at least it can stop anything else happening to my body.

Here’s to my new normal.

Wish me luck.

I’m Sorry

Today has been a bad MS day, days like these really do make you wonder why and how.

I often sit and wonder how I got here. How it was me who ended up having MS.

Some might say it was karma.

At times I might agree with them.

It makes you want to apologise for all you have done and all you now cannot do.

I am sorry for the lies I told.

I am sorry to the people I hurt.

I am sorry for not being ready.

I am sorry for for not loving my sister then, like I do now, for taking her for granted.

To my girls I am sorry for not being all I can be.

Sorry for bringing the nasty disease into their lives.

Sorry for being a burden now and in their future.

Sorry for the days when I simply just can’t.

To my husband I am sorry you had to care when you were young and now as you get older.

Sorry for not always being the best wife I can be.

Sorry to all of your for our future, I can’t see it being pretty.

I am most sorry for the fact the sorry is not enough, sorry will not make this go away.

 

Curse of the Cold Callers

She is cute isn’t she?! Especially so when she is asleep! The hours I spend getting Beboo too sleep could amount to hundreds! Whilst she is asleep all I want to do is sit down QUIETLY and savour the time I get to myself. I might drink a cup of tea or have a wee all by myself!

Bliss.

However the bliss is often short lived. Not because of my three year old no, because the PHONE RINGS!

Now I would not be so angry if it was someone interesting, someone I wanted to talk too. However more often than not it is a Cold Caller.

Yes, like many other mums, these delightful calls follow us like the plague.

Weird thought, seeing as we were put on a list with BT to stop cold callers. We are even X directory.

So how did these creeps get my number I wonder???

Hhhhmmmmmm???

Well one day we decided to ask these delightful people, how the hell the got out number in the first place. I seem to remember the company in question was Eon they informed me it was Emma’s Diary. 

Now I know I filled out the form whist pregnant, but I did, at no point give them permission to sell on my details. Now we have numerous electric companies calling and now opinion polls!

So these lovely people at:

Sold or gave away my information. Lovely.

What I find funny is there slogan ‘We know what mum’s want’ Well I can safely say you DO NOT know what we want. As we do not want annoying calls at all hours, nor do we want our children woken up, after hours of hard work singing wheels on the bus os ssshhhing endlessly this is the last thing I as a mum want!

So thank you Emma’s Diary. I hope you get more out of it than me!

Also, after telling the companies several times I DO NOT want to swoop providers you would think they wold stop ringing, especially EON!

I now give the phone to Pops to deal with:

Also these people know when Beboo was born, giving that information away is just plain disrespectful! Also not something I needed to deal with after giving birth!

What excuses have we given? One being ‘no I don’t want to talk, I just pushed a baby out of my vagina.’

Also when asked how my day was a pissed off mummy politely told them ‘well I was just officially diagnosed with MS so LOVELY yes’

What gives these people the right to give away or sell my information and what gives them the right to KEEP ON calling me?

What are your experiances?

How do you deal with these people?

Have you ever wondered who was the source to where they got this info?

Lets name and shame these people! 

 

The Week is Here

So this is the week I find out my fate. I know I have new activity, so what am I worrying about?

Well I have been forgetting my MS, I have been putting it aside because it just hurts too much. Those who read my letter to MS will know how I feel.

I will be told which, if any treatment I will be having, with treatment comes side effects, which is more of the uncontrollable unknown. I just hope it works, I know nothing will make the vile monster go away, but making it less aggressive would be nice.

I do sometimes find myself sitting and waiting for another attack to happen, part of me wonders if I have already had another, nothing in me feels normal, so how would I be able to tell?

My antidepressants have been keeping me going lately, yes, sad but true. They are giving me this normal feeling and the ability to shut off to anything else.

I saw my bladder lady on Friday (forgot she was coming) She said if I need to have medication for my bladder it will be complicated as it causes pressure in my eyes. My already awful eyes. It basically feels like someone asking if you would rather piss yourself or be blind. Wow what a choice.

Sometimes it really does bring home how terribly wrong your life story has gone. I would never have imagined I’d have MS, not in a million years.

I hate that I have this.

I hate its here for life.

I hate that no-one on the outside looking in truly understands it.

There simply is no more normal.