NO NO NO NO NO NO and NO!

Now if you are a parent and you tell me you don’t ever feel like all you ever say is NO then I simply do not believe you. In fact, I will most probably pull and a face and leave.

These days, with both the girls walking around, pushing, pulling and jumping on each other, the only word I seem to shriek say is NO. And as much I would like to say I have the patience of a saint, I simply don’t and the whole thing is driving me insane.

I could literally climb the walls some days.

Truth is, I have no idea how to deal with it, I know people will say it and I know its true, the whole ‘they grow out of it’ thing, but right now THAT DOES NOT HELP.

Also, my girls are fairly robust and they don’t like to disappoint, so my bet is they simply will not stop.

Partly because the enjoy taunting me. Well, okay mostly for this reason.

I wonder if they are the only children who truly enjoy annoying the shit out of each other? Is it just my odd yet masterful children?!

Is it?!

Some days I literally dread the screams, lets face it girl screams are the worst. They seem to want to start from the get go, or the ‘get up’ in there case. Then the hair pulling and toy stealing begins. Pop’s looking out the corner of her eye to see if you are looking and Beboo doing it regardless because she simply could not care less if you saw. There is simply no way to discipline a one year old, all they are interested in is pooing and finding some old manky hidden food to eat.

Yeh, Beboo tends to laugh when I tell her no, so that is no use. But I know behind those eyes she is plotting her next attack, whether it be to me or her sister is another matter, she delivers no warning. She has learnt the art of stealth and she knows she is way to cute to be guilty.

I genuinely believe she will think her and Pop’s name is NO.

Right Beboo is frowning at me so I must get ready for the next barrage of abuse.

If you can’t be bothered to send help, send cake at least!!!!

#Blogging4Madeleine Happy Birthday Lovely

So today is Madeleine McCann’s 10th birthday, the beautiful little girl who went missing whilst on holiday in Praia da Luz, Portugal in May 2007.

”Blogging4Madeleine”
I cannot begin to imagine loosing either of my girls. My heart skips a beat when Pops is walking by the side of me and she suddenly jumps out of my eye-line, I am suddenly filled with fear only for her to be back seconds later.

The thought of not knowing where my child is, who she has become and whether or not he even remembers who I am. To go to bed every night with only questions. No answers.

So when the lovely Caroline from A Mummy’s View asked for support, I was more than happy to sign up!

madeleine9_rotating_image

 

Here is a photo of what Madeleine could look like now. Please remember, if you think you have seen her to ring your local police station immediately AND

  • +44 845 838 4699 or investigation@findmadeleine.com

  • OR Crimestoppers in confidence on 0800 555111 or www.crimestoppers-uk.org

Lets try and bring her home.

So, Where Do We Go Now?!

I am home, things are normal and I find myself wondering where it is I should go now? I know I need to start thinking about facing my demons, especially as I want to be on the board for the MS society.

If I want to help others, I need to help myself too.

I was awoken this morning by the truly horrific sounding doorbell, honest, think “ERGGGGHHHHHHHHHHHH” with a pingy sound and you have my doorbell. I awoke from my pit (lovely soft sheets I swear) I was expecting it to be the builders back to remove the key safe. Great, I would be greeting full grown men in my old lady nighty, with flat morning boobs (you know the kind) with full on cockatoo hair.

Nevertheless, I answered the door looking rough as bum’oles, only to be greeted by my MS nurse. Phew, I was surprised and wondering how I had forgotten this meeting?

We talked about feeling fine and the fact I had seen my holiday as more of an escape, apparently that is normal. 

We discussed how my feeling fine is my steroids, its something I have gotten used too, I no longer fear the down part, I will simply deal with it. It was so lovely to talk to her as she is the one who understands and she is also the one with the power of painkillers. 

Talking made me realise I have to start to move forward, although I won’t accept it, I need to stop running away, especially as I plan to make as much fuss as possible with the MS society.

Its time people stood up and listened. See people with MS may not be facing death, but we have been told we now have to live with an unpredictable, disabling life long disease. One that has no cure or no written path.

There are no answers, no percentages and no options. 

Its time people really see and hear the stories of people like myself.

Well, I am pleased to be back, I missed my space. So be prepared for more of my inane drivel and please enjoy 🙂

 

A View From the Other Side

I recently met this lovely lady on twitter. Her Name was Nikki, you should give her a follow, she’s lovely. Anyway we got to talking and I found out the her Mother had MS too. Sadly she has now passed away, but Nikki, being wonderful and incredibly strong agreed to answer a few question I needed to ask, to I could see MS from another perspective. Here it is:

How old were you when you found out your mum had MS, or did you always know her with MS and if so when did you start to understand?
My Mum got diagnosed with M.S in 1991 when I had just turned 3, as you can imagine I had no concept of it at all, and to look at her you probably wouldn’t have known yourself. I do have an early memory of my mum in hospital with these massive sunglasses on from when she lost her sight for 2 weeks, other than that I think I was about 6 or 7 when I started to fully grasp that my Mum was special J
This gives me a slight bit of relief. I always wonder if my 3 year old sees me as different or odd. I never though of the word ‘special’
How much did you feel it affected you?
At first I don’t think it affected me at all, my (Year 4) teacher explained to my entire class what M.S was, which I thought was really understanding of them. My Mum did everything everyone else’s Mum did. She took me to rainbows, School and everyone simply adored her. It was around 1998 (I was 10) when things started to affect me. Seeing your Mum use crutches is upsetting whatever the cause, even if they were Neon Pink… She also had a wheelchair, although not fully dependant on it at the time it was always there just in case. My Mum had chronic progressive Multiple Sclerosis, it was aggressive. Doctors all over the country hadn’t seen anyone as bad as her and she was so young to. The difference from 1998 to 2001 was phenomenal. She became wheelchair bound, and lost her speech, sight, was fed through a tube in her stomach, and had other tubes I’m sure you can guess what for, but it was all essential for her to have some dignity. She then eventually became bed bound around 2005. It was hard to sit down for a meal knowing she couldn’t join us, and would be sat a few feet away listening to us eat. It hurts emotionally. I think this is when it affected me most. Not because I felt deprived of a Mother, but because I couldn’t do more. Luckily, I have an AMAZING Father who became her round the clock care. He refused outside help as she was his wife and I’m pretty sure they have led me to believe in fate. Also when we went out in the early days it annoyed me when people stared. I don’t understand what is so fascinating about someone disabled? Granted she did have a fancy kitted out electric wheelchair, so Ill blame her fancy wheels for that part.
That’s lovely, your mother really does sound so amazing and strong. I try and do everything I can for the girls, so I am like every other mum. I could’nt imagine what that felt like, in regards to the eating tea thing. I would, like you be heart broken. I try not to let the girls come with me to appointments etc, so its more normal and they don’t see mummy hurt. Sometimes I worry more about how they feel than how I am feeling. I know all about the stares as I have my stick, but to look at me I look fine. I wish people wouldn’t be so quick to judge. 
Did you resent her for having MS
Never have I resented my Mum for M.S, yes it is beyond frustrating. I couldn’t have her at my University Graduation, or my Dad, but I think that was worse for them not me. I made the decision to move out in 2007 for Uni in Leeds, however I moved back in 2009 and continued my degree locally to be more help. I think the worst part of it was not being able to help her. I know she appreciated the little things I did for her though. I paint her toes and do her nails, and help to bathe her even if I was upset about it, I tried not to let her see. I knew she would feel bad and that’s not what I wanted. It actually prompted me to help others. So, in 2008 I applied to CCUSA (like camp America) and worked at a camp in Maryland near Baltimore, and worked at a camp for disabled children and adults. It was possibly one of the best experiences of my life.
That is amazing it inspired you to help others. With the girls being so young I have yet to come to the help obstacle, I pray I will never need it. I know that she was probably more than grateful  for the little things, after all they tend to make the most difference to the way a person feels inside.  
Did the fact she maybe was not able to do everything you would have liked too ever affect you?
The only thing that has ever bothered me was all the big mile stones in life. Graduation, 21st, getting married, and all the usual family things. That’s trivial though and I got over them not being at my graduation as it was hideously boring, my 21st was as normal as most 21 year olds, and I would have found a way to have her at my wedding had she been here when the time comes.
I admire this, also being a mum I know she would have wanted nothing more than to be there with you. 
Do you see her as ‘different?’
I did, but only because she was MY Mum. I think every child thinks there Mum is different and special. I had an almost glue like bond with her and was even ridiculed for being so attached to her as a child. Which looking back now I am very glad I was so close to her growing up. She was also an amazing singer and this was her outlet. She travelled through the North West and Yorkshire singing her heart out in pubs and clubs and everyone was magnetised to her. I think it helped her forget which I am thankful for.
 I never thought about it like that, that all children see their mum as different. It lovely she had an outlet, somewhere to let it all go. I know for me its writing my blog and being honest even if it is awful.
Was it something you spoke openly as a family about?
Unfortunately my Mums side of the family decided they didn’t want to visit any more, and my Dads immediate side are mainly in Cyprus, but kept in touch by ringing. Obviously this was upsetting that her siblings stopped visiting for my Mother and for the rest of us. I don’t think I could comprehend why they didn’t want to visit there sister, I know it’s not because they couldn’t accept it because that’s not what they were like. I think it was just them being selfish and heartless. However I think she realised the family she needed was right in front of her. We stopped looking up things about M.S a long time ago. Whatever happens in M.S can’t be helped. What will be will be.
Very true, no-one knows what’s coming next, personally this scares me the most, being out of control. It makes me see how lucky I am to have such a good support network family wise.
Did friends, peers notice?
I’m lucky to have the most amazing friends, who would visit me, not be mad if I had to cancel plans, or rearrange. My college were also excellent, and understood if I was late. In fact I did my final major project as a college student on M.S and raised quite a bit of money for the M.S society. At uni I turned up more than people who lived round the corner! So in that respect no one noticed even though I did tell everyone, I had to. I feel proud of my parents they had been through so much, and my Dad stilled looked at her with gooey eyes.
I hope my girls are proud of me when they grow up. Being young my friends have mostly gone, I only have to odd few who support me. But like you say, family really means so much more. Your Dad sounds like an incredible man, I only hope my husband will be the same. 
Did or do you worry you may have it?
I did. In 2007 I started to get symptoms my Mum had I think I was about 18 at the time. I was too scared to go to the doctors, but one night I could barely talk and it looked as if I had had a stroke. I was rushed to the hospital where I was misdiagnosed for the next 2 years. I was diagnosed with MG (myasthenia gravis) a muscle weakening disease, which like M.S is auto immune and can be passed down through each generation. Luckily mine is easier to treat as it is symptomatic and not degenerative.
Bless you, you really are strong. I often discuss is with my neurologist, who always tells me it rarely shows up twice in the same family line in the same generation, it normally takes a few years to rear its ugly head again.
I just want to add, that M.S is different in everybody, like every illness. I have met other people with M.S that have led the most normal of lives. They have the odd bad day and lots of good days. Please don’t think that what happened to my Mum will happen to you. She was unlucky. Unfortunately I lost my Mum on August 25th 2011 she was only 48. However not from M.S, this did complicate the whole situation but the hospital failed her in many ways as they didn’t understand the illness, or diagnose what she had actually gone in for, and saw her as a disabled piece of meat. They assumed that because she was bed bound and all the rest, she had less of a life than everyone else. Her death could have been prevented, and I have always been a firm believer that everything happens for a reason, however I am still trying to figure this one out.
Thank you so much for everything, especially answering my questions so honestly. I know MS is different in everyone, but right now I just can’t help but worry. I cannot believe your Mother was treated this way, I am so sorry and wish I could give you a big cuddle 🙂

Seeing MS from a different view has meant alot to me. It has even helped but to rest some of the demons of the girls seeing me differently, and resenting me. 

Nikki, my love goes out to you and your family, you really are amazing.

Please head over to Nikki’s blog and follow her adventures 🙂