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Wednesday, 23 March 2016

No.295 'Time for closure.'

Yesterday we laid Christopher's ashes to rest along side his parents in the old churchyard beside his beloved church. It took a while to arrange as I had to get permission from the diocese for his ashes to be be buried in a closed churchyard and that took a few months.

It was emotional as you would expect, but I am also happy that his final wish has at last been granted and I am still only two minutes walk away from where he lies.

I have decided it is time to bring my MND blog to a close. All I can write about now is my grief and healing and everyone experiences that at sometime or other. It is something I don't particularly wish to share anymore. I cannot keep picking at the wound if I need to learn to live without Chris, I need to plan and live my life without him. Of course it is not what I want, but it is what it is and Chris would not want it any other way.

I am grateful to the almost 100,000 views I have had on my blog since June 2014. I was and still am overwhelmed that anyone would want to read it let alone so many from all over the world. I have have been told by many in a similar situation that it has helped them and that is very humbling.

Although I will still be involved in fundraising at various times in the future it is time for me to step back  from MND, it consumed Chris's life, I won't let it consume mine too, however selfish that may seem.

Thank you to all of you who have followed this blog, take care and much love to you all. 

Wednesday, 10 February 2016

No. 290. 'Assisted dying.'

I have watched 'How to die: Simon's choice' , I wasn't going to and it was a very tough watch, although I support assisted dying in theory I am not sure I could have willingly gone along with that route if Chris had wanted to go that way. Simon's progression was pretty fast, he was strong willed, he knew his own mind, in spite of Chris's suffering near the end, he wanted to live so very badly, but I knew that last week he was reconciling himself to the inevitable. Although the law says in theory his family should be prosecuted for 'assisting' him to get to Switzerland, it was obvious it was his choice and his choice alone to go that route. In these circumstances that kind of prosecution should never happen.

The hardest part for me was hearing the Professor at Kings talking about respiratory failure and how morphine is given to ease the distress. When the GP tells you there is no upper dose limit for the Oromorph and that the body quickly needs more for the same relief, I knew in my heart that him taking morphine would shorten life and in a way it is a type of assisted dying, but only because it was the only way to ease his suffering. It was morphine that finally ended his life, a last attempt to take away the awful fear and distress my darling boy was feeling as his diaphragm struggled to function. I did not expect him to die right there, right then.

I do still feel a person should have the choice, when you have watched someone die of a terrible disease like MND in the most cruel way, I would not blame anyone for not wishing to live through that. Palliative care at the end of life can only do so much and even that type of palliative care inevitably ends with the inevitable, the end of a life. 

My heart goes out to Simon's family. Their bravery in sharing Simon's story has raised awareness on so many levels. 

Monday, 1 February 2016

No. 289. 'The signs were there.'

I coped with Chris's birthday pretty well until the evening. I told Tam she could go out and that I would be fine on my own. It hit me though that birthday's are always a family affair with us, we all get together to celebrate each other's if we can and there I was, all alone, there was no family celebration, just me remembering happier days and missing Chris so very much. I did lose it for a bit. I haven't actually cried in a while, so I guess it was needed.

I am back to normal today, whatever that is. Yesterday though I had posted a couple of photos of Chris. One was an older one and one was a memory from Chris's birthday two years ago around the time he visited the GP about his limp. I was looking at them today and they both have Chris doing a similar pose and it suddenly hit me. In the photo taken two years ago there was such obvious muscle wasting in his arm, even though we hadn't noticed it at the time. 

MND creeps up on a person by stelth. Chris's MND nurse said he would have had it a long time before he ever noticed any symptoms and I think she was right. It isn't till something happens to make you worry and vist the doctor that the path to diagnosis can even begin.

It actually makes me shiver to think that the signs were so obviously there and we never even noticed or would have even known what it was.

MND took many things, but one thing it didn't take, it did take that beautiful smile.

Wednesday, 6 January 2016

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.

Monday, 4 January 2016

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.