Wednesday, 23 January 2019

My Endo and me

My Endo and me....

“End-o-mi-tri-o-sis?" What's that then!? People say.

It is my secret companion. "My Endo." Not my friend, not welcome, but here non-the less. 

Invisible, silent and hidden from view. No one saw it coming, not even me

My Endo piles on the pain when I’m most vulnerable, when I’m tired or run down. When I have a million things to do.

My Endo changes the rules of the game at it's whim....Taking a disliking to certain foods because it can, and flaring up for days on end for no explicable reason. 

My Endo likes to take away my enjoyment of life. Reducing this (almost) 40 year old woman to a fetal ball curled up on the sofa, with a hot water bottle strapped to her tummy unable to move.

My Endo has silently spread, unwelcome and uninvited through my body like a parasite. 
Covering my ovaries, womb, uterus and bowels in adhesions and cysts. Coating my insides like glue. Leaving me exhausted and too tired to sleep some nights.

My Endo likes to attack when I least expect it, always keeping me on my toes and ready for the next battle. It’s halts my ability to dance the night away at my best friends wedding, and it didn’t want me to join in the family fun on Christmas Day. Instead forcing me to admit defeat and surrender into my pyjamas whilst everyone else had fun around me. 

You see My Endo demands my attention and doesn’t care what I have planned.

My Endo taunts me to rebel. Bending my willpower and determination not to give in to its demands. But some day I have to wave the white flag of defeat, when I just can’t take the pain anymore. And so my life goes on hold until My Endo says so. 

My Endo makes intimacy with my husband hard, due to the pain it likes to inflict on me at times. And it can become a cruel master of my body. Taking away my control and freedoms.

My Endo is unknown by most and has earned the nickname "mums tummy pain” by my kids. It’s easier that way, as most people have never even heard of Endo.

So it becomes my burden to carry. But my families sadness is clear to see as they watch me in pain, frustrated that they can’t help or make this unwelcome guest leave our house. 

And now unfortunately My Endo has become hospital appointments, blood tests and surgery. Stitches, drips and hobbling to the toilet holding my stomach bandages in place.  

So I'm sorry My Endo, but you cant be my secret companion anymore, because people need to know about what a debilitating disease you are.

And sadly I can’t show you the door and get rid of my unwelcome guest. But I can keep you at bay, by facing the surgery and having the treatments to keep you better under control.

I can’t be embarrassed of you anymore! 

So this year, when my body is recovered enough from surgery for me to start fighting back again, I will use my new found passion for running to let people know about you, my Endo. 

We will pound the streets in our trainers to stamp out the misery you cause. We will fundraise for better awareness of Endometriosis.

And I will use my love of writing to tell my story if I can.... as I am sure it’s the same story that many 1000's of women and girls who have suffered in silence for too long now share in common with me. And I will not be silenced by my secret anymore.

We are told  as women not to talk about our monthly cycles. To hide our sanitary products and pop painkillers to numb the pain. It’s private and hidden, behind closed doors. But too many women suffer in silence thinking they have to put up with the pain and excessive bleeding because it’s just part of being a woman. 

Well it’s not. 

It’s taken years of repeated visits to the GP, misdiagnosis and endless tests to get to where I am now. And that’s wrong. 

So, My Endo, I did not want you to invade my body. And quite frankly I wish you would do one! But you’re now part of me now whether I like it or not. 

But you need to know that I am in control of me from now on. There may be days that you win, but I will always bounce back. I will not let you swallow me up. I will take it a day at a time. And I will enjoy the days that you are absent.

So up yours Endo! 
Mrs M X 

Wednesday, 7 March 2018

Sorry folks I am out of lemonade

Hi folks

I just thought I would pop on to give you all a quick update of where we're at.

I was intending my next post to be entitled 'life gives you lemons you make lemonade', but right now I'm feeling more like a squeezed out, dried up bitter old lime than a refreshing glass of lemonade... so that one will have to wait for another time I'm afraid!

The house is silent and the rain is drumming against the window. Its blumin' freezing and dark and  I'm waiting for the coffee hit to kick hasn't yet happened so I'm off to make myself another cup...

Back now.

So, its currently 3.30 in the morning and sleep evades me yet again. I am beginning to look like the walking dead, no amount of concealer is gonna hide these bags under my eyes. (So please excuse any typos you may spot as you read this!)

I am still battling on to get my son the education he is entitled to. My quest has now broadened to legal advice, complaint  letters and all things negative. I really don't like having to go down this route but I feel like we have been backed into a corner with no choice really.  Dealing with this crap just slowly wears you down doesn't it, and its hard to stay positive when all you seem to face is brick walls in your way.

I'm not sleeping and my mind and body now feels like a bloody washing machine stuck on a never ending spin cycle, which wont be helping me feel any better about it all because I'm just so bloody tired. It really is exhausting. Every day is filled with emails flying this way and that, phone calls and therapy. And then when all that settles down and I try and sleep my mind kicks in with all the things I have yet to do, the frustration at the whole situation and the worry of how things will develop.

And all the while still dealing with daily life. A Teenager going through GCSE'S and the incredible stress she is under. The cooking and cleaning and ever growing pile of laundry. A dyslexic daughter who is struggling at school and feels like she wont ever achieve anything. Bills to pay and trying to launch a new business venture all at the same time.

Trying to keep focused on what I am eating because I don't want to undo all the hard work I put in last year losing all that weight when really all I want to do is eat my weight in chocolate and crisps and hide from the world under a blanket watching Netflix.

We are also really lucky to have been referred to the disability social care team ( I managed to get the referral done myself ... at my own request) but even that adds anther layer of worry to my saturated  brain even though I bloody wanted it in the first place and know we need it!! Irrational stupid things like... I have to make sure the house is clean and hovered when the social worker comes, what will they think of my parenting, and there are far more people out there that need more help than we do so I don't want to waste their time.

Crazy isn't it the way we over think and over worry everything.

So right now folks I'm really sorry that it isn't refreshing uplifting lemonade that I'm pouring out to you all today. And the last thing you probably need is to hear me whining. So I will shut up now. I have moaned now far too much for anyone's liking.

Maybe after a decent night sleep (ha ha wishful thinking) I may be able to squeeze out a few drops of the good stuff for you next time.

Because there is a lot of good stuff.

I have some amazing people that are fighting my sons corner with me and amazing family and friends that are keeping me propped up. And my sons mental health has improved drastically these last 7 months he has been off school. So I have to focus on that and take each day, heck each hour as it comes! Because there is a lot to be thankful for. I will keep fighting.

So, I will be back soon to let you know how things are progressing, please keep your fingers and toes crossed for us all.

Take care folks
With much love
Mrs M xx

Sunday, 28 January 2018

A letter to the people making the decision about my sons future....

Those of you that know our situation will know that my son has been out of school now since last summer. This is a copy of the letter I sent to the Local Authority last month a few days before a panel meeting...

To Whom it may concern,

Today, my sons case is being presented to you, the panel.

And as procedure dictates that I can’t be there to highlight his situation to you in person, I wanted to ensure that the personal side of our story wasn't ignored. Because it doesn’t matter how many professional reports are produced for you today; or how many assessments you read, you will never truly understand the full extent of the trauma we have all faced as a family because of my son not fitting into your education system.

You won’t get to see the challenges my son has had to overcome living as a child with complex anxiety, and the social difficulties he faces due to his autism. How his anxiety affects his every waking moment and prevents him from living his life. Crippling him to the spot and ruling his actions and emotions.

Or how it must have felt for him day in day out attending a school that didn’t understand his needs. A school that tried to bend him to fit into their way of doing things, so much so that he could take no more and snapped. How we all felt as we watched on helplessly as he slid into breakdown mode and shut himself away from the world that he could no longer trust.
You won’t see written in those reports the gut wrenching worry I have felt these last few months as I have had to watch on helplessly, as my son broke in front of my very eyes and there was nothing I could do to stop it.
You see my son is 13 years old and has already had two failed school placements. His mental health is fragile, he has several diagnoses to contend with and he lives in a world in which he finds confusing and unforgiving. 

He has lost trust in teachers, in people in general I think because of it all, and he has tried to shut himself away from the world…to keep himself safe because he felt so out of control.

He struggled day in day out in a school surrounded by people that didn’t understand him, saw his anxiety as defiance and a problem to be fixed. He tried to tell them he wasn’t coping through his behaviours and actions, but he was ignored. And it broke him. I can never undo the damage that has been done.

But despite all that, he is a young lad who has such potential to achieve anything he wants to. He has an extraordinary connection with animals, he is an avid reader, he whizzes through maths questions, he has a dictionary like memory and he has a wicked sense of humour. He deserves so much more.

He can overcome his challenges and slowly begin the trust the world again because he is the bravest person I know. He wants to learn, he wants to live a full life and he wants to have another go. But without a support system in place around him that truly meets his needs; accepts him for who he is, and recognises this potential he has inside him beneath all that anxiety, then sadly, he will fail to do so.

He is in very real danger of becoming a mere statistic, someone that can easily be forgotten. Too complex to provide care for so it becomes easier to label him as a school refuser and write him off.

But as his mother I can’t let that happen, the right educational setting can be created for him, I know it can.

It’s really not too much to ask!

All he needs is a setting that truly understands anxiety and autism. They need to be experts in the field, he has been let down so often that he deserves this chance. He has as much right as everyone else to succeed doesn't he?

As his mother, I have seen how putting him in the wrong setting not only breaks my boy in two, but it pushes our family to the brink. I am unable to work as I must be here every day for my son. My marriage is strained as the financial pressures take its toll, and we live as a divided family as our two daughters need to live their own lives too and we have to ensure that they don’t miss out on growing up.

And none of this is reflected in the reports you will read today, but this is our reality. We have got it wrong so many times before for my son and I am determined, body and soul, that this will never happen again.

My son deserves a future, my family deserves some support and we, as parents, deserve some recognition for knowing our son well enough to know what is right for him.

We have spent months agonising over schools. Contemplating whether home schooling could be an option, or whether or not he would even manage to access any support ever again. But I can’t give up hope. I need to be his voice while he is unable to speak up for himself and he needs hope that he can have a brighter future.

My son deserves a bespoke package of care that will address his individual needs and in which he will be surrounded by people just like him, offering him a sense of belonging that he has never really felt anywhere other than at home.

He needs good home school communication, and a team of specialists and therapists on site to help him to  learn to manage his anxiety and mental health, and begin to accept his differences and embrace his diagnoses.

He needs a school that recognises his potential and the importance of looking at my sons needs holistically because  his academic needs are just as important as his mental health needs.

He needs a setting that works with parents not against them. Because I am not the enemy!

And most importantly, when we look around a school and get that ‘feeling’… that feeling that every parent has when they look around and just know in their gut that it’s the right place for their child (autism or not.) That feeling that all parents feel instinctively, and which we can’t quantify in any report… well that needs to be acknowledged and listened to.

Our understanding of our son and our expertise as his parents needs to be embraced and seen as just as important as any other recommendation you may read today. No matter whether the school is out of area, costs more than you’re willing to pay, or is independent. If it's right for my son, then that is all that should truly matter.

Because my decision for what is right for my son as his mum isn't based on budget, distance, catchment area or policies. Plainly put; it is based on what my son needs… and to me it really is that simple.

So thank you for taking the time to read my letter today, and I hope that if nothing else, it has given you pause for thought and a brief insight into how it feels from our perspective during this difficult period in my son’s life.

I will never, ever give up hope, because my son deserves to be happy.

He deserves a future!

And just because he is autistic doesn’t give anyone the right to simply write him off as a mere statistic or make him feel that he can’t achieve anything that he wants to.  

I know that if we can work together on this, then anything is possible. And that is what my son deserves right now... a chance to succeed!

Yours Sincerely
Mrs M

Friday, 10 November 2017

This time around its different

Hi folks
I am sat here thinking what on earth am I going to write about? I’ve been stuck in a bit of a writing funk I suppose. Not wanting to pick up the laptop to share with you what's been happening these last few months. But today I have decided to give it a go...
Back in September the dude was too anxious to return to his school after the long summer break. If I think about it had been coming for a long time but inevitably when things like this happen it turns everything upside down.
My life these last few months has completely focussed on him. He kind of went into what can only be described as an implosion. It was scary, and all those feelings flooded back to me where I felt out of control and short of breath, I was constantly nauseous and felt quite alone in all this.
You see we have been on this path before and it didn’t end well for me.
I ended up becoming ill, once he had recovered. I had held it together for months and then once I knew he was OK, well, I could hold on no longer.
But this time things have been different.
Last time I had to give up my job when it happened, this time I had no job to lose.
Last time I wasn’t looking after myself. I ate all the wrong foods and had nothing for me. This time I am in a much better place with my health, I’ve lost weight and I started running a few months ago. So now I can put my earphones on and leave all the crap behind as I shut the door and get out of breath and sweaty for half an hour. My brain switches off and just for a brief moment all that matters is the muddy puddles I am running through and my heart pounding through my chest as I try and regulate my breathing. I wobble and its not pretty, but I don't care anymore! I do it for me and no one else.
Last time I felt alone, and weak. But this time I have found some amazing professionals that are helping us to get through this. People who finally really get my son and are as passionate as me about getting him the support he deserves. I cannot tell you the difference it makes knowing that someone has got your back.
Last time he was unable to tell us what was wrong. I had to unpick his behaviour and be his voice. Sometimes being ignored and often feeling like his voice held no authority as it was coming from me. And after all I am just his mum!! But this time the dudes voice is being heard loud and clear. We are making sure of that. His voice is the most important at that table, even if he isn’t able to make it to the table, his voice still needs to be heard. And with the help of some amazing people I am certain that this will happen this time.
Last time I felt overwhelmed by the task at hand. This time I know that there is a light at the end of the tunnel. The path is bumpy and long, but I know if we have done it before, we can definitely do it again!
Last time I was willing to be walked all over. I was a newbie mum. Uncertain of how much of a battle it all would become. Unprepared for the judgements and poking around that would happen because of the people who were meant to be helping us not knowing what to do. So, I felt under the spotlight, confused about whether or not my gut instincts were wrong, and I was persuaded to do things that ended up having an adverse effect on my son. This time however I am stronger. I still find any confrontation challenging, it drains me emotionally and I am exhausted with it all some days. But I know the system better now. I understand what I need to do in order to get my son the support he needs. I am less willing to accept things at face value and recognise the strength in having a team on your side. I don’t need to do this all on my own this time.
Because my son deserves the best.
My son deserves to be happy.
My son deserves to be supported by people that truly understand the difficulties that face children like him.
My son deserves future in which he can live as independently as possible.
So right now all my energy is focussed on the goal of getting him better and finding a school that can meet his needs as he faces becoming a young adult with all the complications that brings.
This is where we are at now. This is my life...6 am emails, assessments, meetings, sleepless nights, medication and banging on doors to get answers.

And you guys all deserve to know that if you are going through something similar, you’re not alone and there is always a light at the end of the tunnel.
And I promise I will make more of an effort to start sharing my thoughts again with you.
This time around I will not give in, I will not take no for an answer and I will be his voice for as long as he needs me to! 
Mrs M x

Thursday, 17 August 2017

A letter to my husband

Dear Mr M, 

So today we celebrated 16 years of marriage and 24 years of being together. It's been a roller coaster adventure of a ride Mr M. With highs and lows, moments of absolute despair, and yet many more times of laughter, joy and happiness.

As I sit here writing this now I can’t help but create a picture in my mind of the two spotty teenagers that met all those years ago, so young and carefree. Back then all we thought about was fun steamy nights, and sneaking around after curfew. Love letters and living in the moment.

You asked me out whilst we were sitting on a bin sharing a bag of soggy chips, and I was smitten! What more could a girl want.

You were older than me and I was so proud to strut around with you on my arm.

We had our whole lives mapped out ahead of us didn't we?

But we quickly learnt that what we had imagined for ourselves and our kids wouldn't come anywhere near to the reality we would face. 

Because now, well now so many things have changed.

Our lives, like so many others parents out there is not one if I'm being completely honest I would have chosen. Autism, Dyslexia, health care plans, doctors’ appointments, social services, suspicions and even judgement of our ability to parent.

Not to mention the countless assessments, tests, and years and years of fighting a system that doesn't understand our son, just to get him the support that he's entitled to.

So let’s face it Mr M, I am anything but young and carefree nowadays. The hair dye and twitching eye are certainly testimony to that. I am no longer that ‘live in the moment’ kind of girl you fell in love with. 

And I would rather sneak into bed for some 'shut eye' if I ever got a child free evening... never mind staying out after curfew!

But who am I kidding anyway. Nights out are a thing of the past. Because if we do manage to escape, it’s usually separately as getting a sitter that can manage our tribe is a rare treat.

And sadly, we no longer stare into each other’s eyes over soggy chips (well I don't miss the soggy chips part it has to be said). Because I am usually cooking three different meals to accommodate the diverse food fads of our kids in this house!

It was heart-breaking in the early days of our marriage watching you reach out to our son to do the usual father son stuff; you know the football, cycling, and sports like all your friends were doing with their sons. To then see the hidden rejection you felt when he had a meltdown pitch side.

I know how hard that was for you to understand him before he had his diagnosis. I could see the pain in your eyes as you felt so helpless to see your little boy so anxious. But as it turns out, our children have taught us so much more than we could have ever imagined.

Then add into equation trying to find time for each other, work and responsibilities, high blood pressure, teenage daughters, lack of sleep,  financial pressures, dogs, cleaning, laundry, home schooling….. I mean c’mon the list goes on. There’s no wonder we are not the same people we once were is there?

I don’t know about you Mr.M, but I no longer desire the world at my feet. I would simply be happy with a hot bath, a good book and 5 minutes peace on the loo every now and again. Now that would be lovely.

But seriously, I want to grow old with you whilst we watch our kids growing up being happy and proud of who they are, not who society tells them to be. Together we are helping our kids to stand up for themselves, love themselves, and hopefully they will leave us one day to fulfil their own potential (or like our son says he will be living in a caravan in our back garden!) Whatever makes them happy. 

Despite the stress ours is chaotic fun mad house. Our kids are happy and loved and I wouldn't have it any other way (most of the time.)

Whether they are Dyslexic, Autistic, or a little ditsy sometimes. They are all unique and amazing because we made them, I mean that's a miracle isn’t it.

We made 3 perfect lives- that’s enough legacy for anyone I'd say.

You see some things just won’t change Mr M. Despite all the crap that has come our way these last 24 years, I still love you with all my heart, and I am more proud than ever to strut around with you on my arm. Because you’re a wonderful father to our kids. I am so proud of the man my teenage first love has become.

So for now, I hope you can settle for an exhausted wife that would rather have an early night and a hot steamy bath, and not that youthful carefree bit of stuff you hooked up with all those years ago?

And like our wedding song says “Will you still need me, will you still feed me, when I’m 64?”

Well we're already halfway there Mr M, where have the years gone? 

So as long as you’re not feeding me soggy chips, I’m up for the next 24 years adventures… are you? 

Mrs M x

Wednesday, 16 August 2017

Summer Holidays Diary Week 5- 'Camhs and the anxiety monster'

( I've lost count of the days so from now on I'm on weeks.....we're currently on Week 5 of summer hols)

So, we were at Camhs yesterday to see someone about my sons increasing anxiety, difficulties around people and general inability to function in the world around him. They asked me what anxiety was preventing him from doing and to be honest it was easier telling them what he could do which is walk the dogs in the woods and visit the field to plane spot)

"Could he go shopping?"
"Can he access Leisure activities?"
"Can he visit the dr?"
"Socialise with friends?"
"Visit family?"
"Eat out?"
"Interact with his sisters?"
"Access his local community?"
"Communicate with others ?"

What we didn't talk about too much was what he can do, and he wouldn't get out of the car, then when we did coax him out he hid in the bush at the back of the building!

But in a way though, although these things can often make you come away feeling crappy as its so focused on the negatives .... I think they got to see how anxiety is ruling his every waking minute. Which I needed to make them understand in order to help him, and then hopefully we can get some support in place for us all as a family as its so hard seeing him losing himself to the anxiety monster🙁
Mrs M x

Monday, 14 August 2017

Summer Holidays Diary Day ( 'no blumin idea anymore; CAMHS... more to follow' )

Day ??

Hi folks I've been a little unwell the last few days but today was Camhs, so I dragged my dry shampooed, dosed up on painkillers butt along to the appointment 'cos there was no way I was gonna reschedule that appointment for another day!

Mrs M x