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. 

No. 294. 'Time moves on.'

Last weekend was poignant for me in many ways. It was six months on Saturday since MND took my darling Chris, where has that time gone? I am learning to be independent and live without him, but the missing him never ends and neither do the flash backs to his last few hours. Fortunately I have family and friends who don't mind me talking about it and that helps a bit.

Sunday was Mother's Day and while I remembered my mum who passed away in 2012, the person I cried for was Chris, how wierd is that? 

On Tuesday my sister-in-law and I went to the Cornish MNDa branch lunch up in Newquay. I found it a very difficult experience as last year Chris came too and seeing others with MND, well it dug stuff up I guess. One lady who cares for her brother, he was there too and he has had MND for 7 years I think, told me that she thought it was better if it took you quicker as she though it was crueller if you lived longer. I won't lie, I fought back the tears when she said that to me as despite all of the things MND had taken from Chris physically and with the farm, he would have given anything for a few more years with us all, especially to see Chloe reach 21 and graduate. Of course the last month for him had been awful as he couldn't breathe, but if the progression had stopped in June I know he could have coped with that for many years to be able to stay with us all. I know that lady didn't mean to upset me and I don't know their circumstances, but I know of many people who have had MND for many years and are still glad to be alive and are living life the best they can in the circumstances. Of course I just want Chris back end of, I didn't want him to leave me. Having said all that the people there were lovely and it was good to see such a small branch so well supported.

In two weeks Chris's ashes will be interned in the village churchyard next to his parents. It has been strangely comforting to have his casket here with me and yes I kiss him good night and tell him I love him every day. It will be strange when that day comes, but I am fortunate that the churchyard is literally next door, so he won't be very far away. 

I am still busy planning the MNDa music event and auction we are holding in the autumn, sorting out the basic logistics of timings etc with three bands and an auction is challenging, but friends in the bands are advising me, so that helps. It is good to have something positive to focus on and The Brighton Marathon is getting ever closer and I will travel up to cheer Chloe and Tom on. 

I am getting back into my painting and I surprisingly had three of my paintings picked for a local art fair, that boosted my confidence a bit and painting is good therapy for me. 

Life has to go on, it isn't always easy, but go on it must. 

No. 252. 'The MND Tsunami.'

(A blog I wrote last September, but chose not to share again till now.)


I'll let my boy sleep for now, I talked to him so much yesterday I am sure I will have tired him out.

MND is like a Tsunami that just builds and builds and it came into our lives carrying not just MND, but all the professionals along with it to care for Chris and all of the equipment. It has swept everything away forever including my darling Chris and it has just left us behind as a family clinging to a high rock alone definitely feeling abandoned. All those professionals, quite rightly, were there for Chris, not us. I feel I am waiting for a rescue boat to come and rescue us and tell us what to do, tell me what to do, how to cope and get on with my life. The only saving grace is when I look around there are other families who were swept away by previous MND tsunamis trying to survive their lives without their loved ones too and they are shouting out there love and support to us.

It does not get easier as the days go by, it gets harder infact. The missing him, that is so much worse each day. I'll block it out for a while and then someone will phone or a pile of cards will appear in the post and it will set me off again. I know grief is normal and is a process, but knowing I will never see  Chris again in this world is just killing me.

Someone came and collected all the feed yesterday that was left, almost a months supply, they said they will just dump it, what a waste. The wheelchair was supposed to be collected yesterday too, but nobody turned up. As much as I would like all the equipment taken away it is all part of that tsunami and it feels like life is erasing what Chris went through and I never want to forget that. He had to live with MND and it ultimately took his life, I must never forget.

I feel almost zombie like the with way I deal with the day. I wander aimlessly picking through the remnants of what's left and all I can feel is devastation and loss. Life will never ever be the same and at the moment I am haunted by what Chris went through those last few weeks, especially the last day, that slow, cruel, death, I shall always wish I could have done more to help him. The really sad thing though was the difficulty he had in speaking, mainly because of lack of breath, he was so tired all of the time and slept a lot and was certainly too tired to use the speech devices made available to him. It meant this last month he rarely spoke very much except to call my name or say I love you. There were so many conversations we should have had and he would just look at me lost when I asked him. I think too, as I wrote once before, he was afraid to cry in case the tears made him choke, so I think part of not speaking was to protect himself from that and maybe me too from any more pain. That would be so typical of Chris, he would not have wanted to upset me. 

I have heard a distant whisper in the village as to why I write this, that it can't possibly help me, they are so wrong. Memories fade, I have this past 16 months written down in this blog, the bad times, but the good times too and I do not want to forget the path we have walked with this hideous disease. Plus so many people in the MND world have told me it helps them and that is a consequence I never foresaw. I hope too that I have educated others about MND and how devastatingly cruel it is.

We still need a cure so badly or at the very least something to hold back the tsunami wave for a few more years before it finally sweeps in. Chris would have willing grabbed just a few more years, especially to see Choe's 21st and graduation, to watch her and Tam marry one day, to meet his grandchildren, to spend more time with myself and our family.

How will people ever be willing to help if they don't know what MND is? I hope my blog plays a small part in raising MND awareness.

So yes it helps, in so many ways, to live with and survive this MND Tsunami wave.

No. 293. 'You can't hide from grief.'

For me dealing with grief has been like buying a cheap box of plasters, they may cover the wound for a short while, but they don't stay on for long and then you see that the wounds haven't healed at all, so you try a better plaster just in case it might work this time, but it just peels off again. 

It's then you realise that no metaphorical plaster is ever going to work.

You see that grief isn't going to go away, it has to be lived and felt and most importantly faced and that means it is going to hurt.

You can run, you can hide, but it will always find you. 

You'll never stop the loving or missing of the one taken from you, but the consequence of that love is that grief will always be one step behind you. 

Facing that grief, the pain, the nightmares, the flashbacks and the never ending loss and sadness of missing and losing Chris to the cruelest disease known to man is the hardest thing I have ever had to do.

The plasters are still on the shelf, I may take another one out later...... I never have been good with pain.

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. 

No. 291. 'Holding on and moving on.'

Chris and I were born 6 days apart in the same year. His birthday was in January, mine in February so it meant for a difficult week.

After I had got upset on Chris's birthday I made sure I didn't spend mine alone. I spent the morning in the charity shop and Tam and Kelvin treated me to a night out at the cinema to watch the 'Dad's Army' film. Tracey was working, but Jordan came too and we had a takeaway pizza before we left. It certainly helped to have company. That is two more firsts out of the way. It would have been lovely if Chloe and Tom had been home, but we had a nice chat during the day.

I guess another first will be Valentine's Day. In recent years we never celebrated in any fancy way, but we always bought each other a card and had a nice meal. 

Something I am always grateful for is that Chris always kept a diary, he even had me write it for him that last week of his life, when he could no longer write. For some reason the day he died I just wrote The End, it strangely seemed to be the right thing to say. He was never sentimental and just wrote the facts, I can look back at them and see the dates when we first went out and when he proposed. I was never good at writing diaries and I don't remember those specific dates, so reading them now and then, filtering out the mundane farming info, are quite comforting. I have his diaries dating back to childhood and reading him write 'Done mentals today' mental arithmetic, really makes me giggle. His usually ended up with him rushing out to the farm and his beloved ponies. I often think in another life Chris would have loved to have been a showjumper, he really did love horses.

I still have flashbacks to the time Chris died, but I am also starting to remember more happier times, that seemed to be blocked to me for a while. He rarely got stressed or angry and he made me laugh so much and it is good to remember those times.

Before he was ill I made a half hearted attempt at being a pet portrait artist, lack of ambition and fear meant it didn't succeed too well and once Chris was diagnosed I refused to spend hours painting when I could be spending time with him, so I stopped. It was always a cruel irony that MND allowed us to spend precious time together, whereas the farm always kept us apart. Since Chris died I have started to paint again, half heartedly to start with, but when I did it was the perfect distraction. I signed up for a watercolour course and that has fired me up to paint more with my oils too. I have a plan that should allow me to take my art forward again next year and I think Chris would approve. I have started to get excited again about something and that hasn't really happened in a long time.

My sister-in-law and I are also organising a MND charity event for the Autumn, that is giving me something to focus on too, I may not be able to run a marathon or jump out of a plane, but I'm not too bad at organising. Asking local businesses if they can help and finding out some have read my blog is very humbling and I have already got a few nice lots for the auction side of the event.

It would be very easy to let grief swallow me up and sometimes it does, especially during the lonely nights, but I know Chris would not want that, he could never bear so see me cry, I said a while ago that I need to live the life I have especially because Chris had his taken from him. Wherever he is I want him to be proud of us all, to be smiling down on us content that we are making the best of things, but always knowing that we will love and miss him forever. 

Moving on is part of survival, but it does not mean that you can't hold on too, My love for my darling boy is embeded in my genome, that will never change, I will never stop missing him and I have to believe as I move on with life, that he is there with me sharing every step. 

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.

   

                                      

  

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.