No. 288. 'Remembering the good times.'

It is fast approaching midnight and what would have been Christopher's 58th birthday. I have tried not to feel melancholy about it, but I inevitably have.

This time of year is usually shopping for birthday cards and Valentine's cards for each other as our birthdays are very close, but I find myself rushing past the Valentine section in the shops, one of those little things that no longer apply in the literal sense.

I have however, bought Chris a birthday card and I picked up a little bunch of red roses for him and they will sit with his photographs and I shall light another candle for him. It is 21 weeks since he left us and although the tears don't flow as much and I am trying to get on with my life, I still miss him terribly and wish he was here with me every second of every day.

I shall remember Christopher on his birthday as the man he was before MND took hold of him. He was so much more than that awful disease and I will not allow it to taint all the lovely memories we had. 

I have just heard of another young man who has died from MND, it is always so sad. There seems to be glimmers of hope though on the cure front and though a cure might not come soon, the chance that there will be one day seems ever more possible.

I hope they serve you a whisky Mac up in heaven my darling, I shall raise a glass to you tomorrow.

I will love you and miss you always.xxxx

No. 277. 'A paradox.'

It is strange and I am not sure if this is normal, but the more time that passes since Chris died and the more I feel I am adapting and moving on and trying to get involved with things, the more withdrawn I am becoming. Leaving the house becomes an act of procrastination unless I really have to go somewhere and when I am out I feel I am on the end of a very long bungey chord, being pulled back home whether I want to or not.

Barring the odd two or three MND friends I have gotten to know, I do not wish to share mine or hear others stories of grief. It is inevitable in this MND world I now live in that there are constant reminders of others taken by this disease and constant posts of grief and loss. The same world that has saved and comforted me throughout this nightmare can also be like salt in the wound. Everything is a paradox.

Is this how grief goes? The endless numbness, telling everyone you are OK, because explaining otherwise is just too much effort and you know that won't be what they want to hear. Where do I find the strength to climb out of this grief quicksand of apathy and withdrawal. Will it pass? Is this normal? Do I just ride it? If I stop struggling will I stay afloat longer? 

The last thing I want is others sympathy, I never could stand that, I hate being fussed over. I just want to feel properly happy again, to wish Chris was still here and that MND never existed. 

No. 274.'Outside smiles V inside smiles.'

One of the new things we have to learn at my slimming class is to smile, be kind to ourselves, praise ourselves and give ourselves 'me' time.

I am not short of 'me' time at the moment, but it made me think about the smile thing. I guess each day gets a teeny bit easier since Chris died, just a teeny bit. I am making myself do social things and I am doing some volunteering stuff, I am getting back into my hobbies, I am learning to be independent and dependent on just me, tough when I relied on Chris so much, but does any of this make me smile? 

I realised that although my face will go through the actions and a smile may appear there to others, I don't think I have smiled inside for a very long time, way before Chris died. Living with the love of your life having a terminal illness does that to you. I think we both stopped internally smiling on diagnosis. I don't mean Chris or I lived our life in a depressive state for 16 months. We both tried really hard to enjoy life as best we could and have fun, but for me, watching MND slowly consume Chris was devastating. Inside my heart broke on May 5th 2014 and it is still broken.

I guess my body is starting to smile, but my soul isn't there yet. My children give me plenty of reasons to smile and they keep me afloat, but everything else is such an effort. The urge to retreat to my cave is overwhelming at times. I know this is normal, but I want to have my soul smile again without feeling guilty or that it is some kind of betrayal to Chris. I will never stop loving him or missing him, but I don't want to feel sad for the rest of my life. I know damn well too that he would not want me to be sad either.

I need to be patient, not my strongest point and be kind to myself, never been good at that either, but I am surviving this. I might not like being a widow or want it and I wish everyday to have Chris back, but I am surviving it. I still talk to him everyday, I still say words of love over his ashes casket every night (they will be interned at Easter), I still snuggle up to his pillow. I still miss him so very much, but I will survive this, I owe it to him and my children and myself. 

Hopefully one day I will learn to smile inside too, for now the smile on my face will have to do. 

No. 273. 'Time cannot be rushed.'

You can try and run away from grief for so long, finding distractions, trying to block it out, but there is no real escape. It is always going to catch up with you again. Sometimes you have no choice, but to let it in. 

I am alone quite a bit now, that is OK, life has to go on, but the hours can seem endless. There are only so many things you can distract yourself with. Sometimes I get flash backs to Christopher's death, how I hate MND so much, it is so very cruel. In my lonely hours I do not understand why it chose him, or why it took him so soon. I miss him so very much. I still hate going to bed, when I do I stay awake till the early hours sometimes, playing games on my iPad, or reading, not wishing to actually sleep. I miss everything about him and I keep hoping still that this is all a bad dream and that I will wake up.

I often wonder why I share so much about myself so publicly. I am not sure why I do. Even now though this blog is still about MND. I am a widow because of MND, my children have lost their father because of MND, I am alone because of MND, every single one of the changes that have happened in the past 20 months are because of MND. Chris is dead because of MND.

People are still dying and I can't bare it. I am not as brave as some might think, I have always been a coward. I feel guilty that I don't do more for the MNDa, but at the same time all I want to do is hide away in the safety of my home, blocking out the outside world. People other than family have moved on from Christopher's loss, that is understandable, but although it may appear so I have not. 

I surround and cover myself with metaphorical plasters, but like the real thing, they never seem to stay on for long. Living life is like trudging though mud at times. 

People will ask how I am and I say OK, they are relieved, they don't want to hear me say that I am not, that my heart is still breaking, that I miss my husband every second of the day. They want me to be OK, so I let them think that I am. It is so much easier that way for them and for me.

Another day will come, another day will be lived, I will smile, I will laugh, i will cry, I will make myself exist and move on and one day, no doubt it will be easier, the trouble is, time cannot be rushed and that day seems a very long way away.

No. 272. 'The media and MND.'

Just my own opinions.

There is a controversial story line on the TV soap HollyOaks at the moment, a particularly obnoxious and evil character has MND, as far as I am aware the character's father had it so he knows what is to come and long story short, he is plotting his own demise. I won't get into the controversial nature of mixing a nasty person with MND and whether the right awareness has been raised as I don't actually watch it. I do know that the actor playing the part, Jeremy Sheffield has gone out of his way on Twitter to raise MND awareness and funds for the MNDa.

I am more interested in how a MND death is dealt with in the media in general. I first found out about MND when I was in my teens when David Niven was diagnosed with it. I remember thinking what a horrifying disease it was and how it was really scary. Over the years though the only time I heard about MND in the media was when someone wanted to go the assisted suicide route to end their life. 

I am fully supportive of assisted suicide for those who are terminally ill and of sound mind. Only they know when their life has become too unbearable, but not everyone with MND wants to go that route. 

Chris had the option of having a trachaeostomy to help his breathing and prolong his life. He chose not to go that route after being told it would involve a 3 month stay in a hospital 100 miles from home, plus he personally did not wish to be kept alive in a failing body. He could not get his head around the modern technology that was available to him and his world was becoming smaller and smaller. He was a hands on cattle farmer, he loved the countryside and being outside, he mostly only ever came in to eat and sleep. This MND world he was thrust into was totally alien to him. Many people live very successfully with a tracheostomy, it was just not for Chris. 

However....Chris did not want to die... He wanted to live and he literally fought till his last breath to stay alive. He still felt he had everything to live for, his family especially. We did discuss it and he would not have gone the assisted death route. Having a AND (a natural death order) put in place is not the same thing, he just did not want to be resuscitated come the end.

Casualty kind of dealt with both sides of this coin on two separate story lines. It would be good if MND was ever dealt with again on a TV programme, that it dealt not just with the awful truth of what MND is, but to also show the courage and fight of those who have it and what the whole family goes through and loses and the actual problems and logistics of having a disease like this.

Any kind of MND awareness is good and the past 18 months since the IBC it has mutilpied beyond belief. It would just be good if it could be dealt with in the media in a truly honest way.

All those who have/had MND, including my darling boy, are some of the courageous and bravest people I know.

A programme like HollyOaks is just a soap, they aim to be controversial, I just hope their way of dealing with MND brings more positives than negatives.

No. 271. 'Reflections.'

A new year begins tomorrow and I have been looking back at my blogs from this time last year. I cannot actually remember what we did on New Year's Eve, I know on January 1st we went to Redruth cinema with some friends, to support the film 'The theory of everything.' We set up a MNDa table in the foyer to raise awareness.

I truly never really thought that would be our last new year together. We both thought Chris had more time. 

Yet here I am facing a new year without my boy in my life. My children are grown up and moving on with their lives and that is as it should be, but I am spending more and more time alone. Imagining a future by myself takes some thought. I am still a little lost as to where to go with my life. I would like a job, a real purpose again. I would like to paint again properly. I want to learn how to live alone and not be scared by that thought. I will never stop missing Chris or loving him, but as much as I dream and fantasise, he is never coming back. I am not sure I will entirely come to terms with that fact and I am not sure I really want to. 

It will always be wrong that he is not here, that he got this awful disease, that we will never know why. The changes and losses we have both had to deal with over the past 12 months have been too much to bear at times, but that is life and I have learned on more than one occasion in my life that you never know what is around the corner and not to take anything for granted.

When I first thought Chris might have MND I couldn't quite comprehend it. It was one of those 'But this only happens to other people.' kind of moments. I knew enough about this disease even then to know how scary it was. Sometimes our fears do become our nightmares, sometimes bad things are all to real.

Tonight I will be with all my family, excepting Chloe and Tom as they are sharing new year with his family. We shall all though raise a glass to a most wonderful man, we shall mourn that he is not with us, but be grateful that he was part of our lives for as long as he was. He saved me and brought me back to life many years ago and now I need to try and move on, but it will not be easy. He will always be with me, I know he will and when the bad days hit I will grieve and cry and succumb to the wave and wait for him save me again as the wave passes once more.

I also remember all the brave MND Warriors I have gotten to know and particulary remember those who have become MND Angels like Chris. Too many brave souls that have been taken too soon, too many broken hearts that have been left behind. I will fight back as best I can to help the MNDa, along with 1000's of others, to find a cure for all those who are still fighting for their lives.

To my Christopher.

I will do my best my darling boy to not let you down, to make the right choices, to take care of your daughter and your legacy. I will do my best to live each day with you and for you, to never forget you, to never stop loving you, to make sure you are with us when the special times come. You live on in your daughter, I see you in her smile,  and you will live on in your future grandchildren. You will have the love of us all forever.

Fly free my darling, fly free.

No. 269. 'Is it me?'

Who is this person there below and why am I up here? She looks like me, she talks like me, but it can't be me because I am here. 

She looks so sad, so empty. She shows no feeling, no emotion, she just gets on with her daily life robotically, routinely. She embraces the love and happiness of those close to her, she is still there for them, but her own happiness is lost somewhere, her zest has gone, her reason to live at times evades her.

But then I see.......is it me? 

I think this thing called grief has wrenched all these things from her. She wants to feel truly happy again, she wants this pain to leave her, the pain that was left when her love was torn from her. It left her so incomplete, so bereft, so heartbroken, so empty, so lost. She mourns her lost past, her lost present and her lost future, oh yes she mourns that most of all. The future he was meant to be part of, that future looming without him that leaves her flailing in the dark. How does she live without him, what does she do? 

I see her grateful for her children, for their life, their future, they are a light, a beacon, that gives her hope in this future void.

Sometimes the pain, the grief, they take her beyond her physical body and it carries on without her. It is how she survives this utter, devastating loss.

But then her mind and body are reunited again and she has to feel, she has no choice.

And then it hurts, so bloody much and the only thoughts she can think, through the jumbled vocabulary of her present life, that rise beyond the pain, are that she wants him back. She wants him back so very, very much. There are no words to consol her.

And then I see, I feel, I know.......it really is me.