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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.

Tuesday, 29 December 2015

No.270. 'My battle cry.'

What is this thing MND, that turns a body on itself? What makes it relentlessly take away it's own existence by killing it's life force. What makes it so cruel and heartless? It has no compassion, no respite, no reprieve. It's mind never wavers from it's relentless course. To never stop till that last step is trod, that last word spoken, that last swallow choked, that last breath bravely fought. 

Yet in those final hours when it knows it has won, it has yet to defeat that spirit. To gaze into the eyes of the physical self and still see love and fight and passion, it will never take that. The last 'I love yous' that are expressed in so many different ways. It cannot steal that. A touch, a whisper, the gentlest squeeze of your hand, and those eyes that shout out love.

MND, you steal and have stolen so much, forever taken, but you will always be bravely fought. One day you will be defeated, that love and fight lives on beyond your cruel theft and you will be the one to die one day, never doubt that. In the taking of each and every life you have inspired 1000's more to fight back. An army is advancing and your days are numbered. 

Don't ever doubt that for a second. To those left behind when you have done your worst, amongst the grieving and utter loss, the only consolation left to them is that you will meet your own end one day, that MND will be consigned to history books and and we will all rejoice to know that no one will ever be taken by you again.

That will be the day we will have won.

Thursday, 24 December 2015

No 268. Merry Christmas and keep fighting.

I have been dreading Christmas Eve more than anything. It was a time when late at night Chris would come in from midnight mass after he had been working all evening (when the kids were young I couldn't go) and I would grumble at him at yet another Christmas Eve on my own with the kids. We would then open our own stockings full of silly little cheap pressies before we went to bed and then we would snuggle and hug, all grumbles forgotten. We would be woken early even when the kids were quite grown up, to see them open their stockings and then Chris would disappear out to work for an hour before I long for those Christmas Eves again. They weren't perfect story book Christmas Eves, but they were ours.

I miss everything about my boy. I want to hug and hold him so much, something that was denied us in the last few months because of his breathing problems. I want to kiss and cuddle him, talk to him, laugh with him, see his smile, hear his voice, I want him all, I want him back. People tell me he will always be in my heart, but it will never be enough, I want what I can't have, the person, the man, my love, I just want him back.

There are many brave warriors out there still fighting MND. MND has been kinder to some and given them more time, others it chose to take sooner like my Chris. It has nothing to do with how much someone fights this awful disease, I believe it is just random luck as to whether it takes you sooner rather than later. 

As mentioned before Chris feared he would not be here this Christmas, but deep down neither of us believed that he wouldn't be. His MND didn't seem to be progressing fast, it hadn't affected his breathing, he was sure he had more time yet. He did not want to die and although he didn't shout it from the roof tops, he was fighting MND with every fibre of his body.

Chris acknowledged MND and impending death only as little as was needed. Rarely did he admit that MND would end his life early. In his last few weeks he would not discuss funeral arrangements or stuff like that. I knew he wanted to be cremated and have some ashes spread on the farm, I managed to get him to chose one or two hymns, but that was it. 

Chloe had come home to visit Chris in the last week of his life. She and Tom had a wedding to go to on the Friday and Chris insisted that they go back to Brighton and enjoy themselves. He kissed and waved her goodbye and I could tell he was very sad to see her go, but in hindsight I do not think he wanted her to see him die. The vicar came to see him later that day and he said things had changed. I asked what he meant, did he mean as in dying and he said yes. That really upset me, it was the first time he had acknowledged that he was actually dying, possibly close to death and that broke my heart. The next day he asked for his sister to visit. He did not want her to leave, he told her he felt different, again he felt he was dying. I asked him if he was still fighting, did he want to give up? he said he was still fighting to live more than anything.

So what I am trying to say is that a fighting spirit is important, never giving up is important, but if MND decides to take you sooner rather than later, it does not mean you did not fight enough. MND does what it wants, regardless of how much you fight. Fighting it while you are alive makes living with it a little more bearable, makes you feel a little more in control, even if the reality is so different. It is important to be angry with it, to put two fingers up to it, it helps our intellect believe we can win. It gives us hope.

Meanwhile our lives go on, they have to. I am going through the motions, but I am thoroughly enjoying having my youngest home, though she sadly goes back on the 27th. We have had fun doing mummy/daughter stuff, doing baking and Christmas preps together. It has been good.

Tomorrow a place will be laid for my darling boy, we will raise more than a glass or two to him and we will pray that 2016 will bring a much needed cure for all those still living with MND. May MND show some benevolence and allow them to live till that day comes.

And to all those who have lost someone they love to MND, especially those I have gotten to know, I send you so much love and hugs. If MND had never entered our lives I would never have gotten to know you, but your love and support has been so very much appreciated. We will face 2016 with part of us missing, but we will all be here for each other. My life has been made richer for knowing all those who have been touched by this hideous disease.

Merry Christmas and love to everyone.