tag:blogger.com,1999:blog-49331020185638152122024-03-05T17:23:19.406+00:00Motor Neurone Disease, fighting it together.Hello, my name is Lesley Roberts and my husband Christopher, who was a farmer, was diagnosed with MND on May 5th 2014, sadly he lost his courageous fight with this awful disease on September 5th 2015.
I wrote this blog to ,share our journey as a family with this disease, the good days and the the bad days and hope to raise awareness of MND in the process.
(Follow on Google+ or on Twitter for updates at @soulpunkpixie, or sign up at the bottom of the page for email notification.)
soulpixiehttp://www.blogger.com/profile/03598961234333800139noreply@blogger.comBlogger282125tag:blogger.com,1999:blog-4933102018563815212.post-35993452690308821032016-03-23T10:29:00.001+00:002016-03-23T10:29:35.130+00:00No.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.<div><br></div><div>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.</div><div><br></div><div>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.</div><div><br></div><div>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.</div><div><br></div><div>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.</div><div><br></div><div>Thank you to all of you who have followed this blog, take care and much love to you all. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpsoapwkmKF8KNQkjxbcJ8QijsiOJXVY4rM-I08ZCbMcrYclu2z4B6ZPz4Xphwt22JqtkbxPwDZ4zoS5MhtrdTQUguFm61BzoaeVgCeh__kHoyu1kpXZ_Aw2FxLYcMniser1NKrVpyQT8/s640/blogger-image-1916812704.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpsoapwkmKF8KNQkjxbcJ8QijsiOJXVY4rM-I08ZCbMcrYclu2z4B6ZPz4Xphwt22JqtkbxPwDZ4zoS5MhtrdTQUguFm61BzoaeVgCeh__kHoyu1kpXZ_Aw2FxLYcMniser1NKrVpyQT8/s640/blogger-image-1916812704.jpg"></a></div><br></div><div><br></div>soulpixiehttp://www.blogger.com/profile/03598961234333800139noreply@blogger.comtag:blogger.com,1999:blog-4933102018563815212.post-63112051653482662542016-03-10T20:34:00.001+00:002019-06-02T22:20:25.896+01:00No. 294. 'Time moves on.'<br />
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.<br />
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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? </div>
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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.</div>
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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. </div>
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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. </div>
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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. </div>
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Life has to go on, it isn't always easy, but go on it must. </div>
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soulpixiehttp://www.blogger.com/profile/03598961234333800139noreply@blogger.comtag:blogger.com,1999:blog-4933102018563815212.post-53734622115530796202016-02-25T09:21:00.000+00:002020-01-22T19:28:03.803+00:00No. 252. 'The MND Tsunami.'(A blog I wrote last November, but chose not to share again till now.)<br />
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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.</div>
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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.</div>
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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.</div>
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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. </div>
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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.</div>
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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.</div>
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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.</div>
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So yes it helps, in so many ways, to live with and survive this MND Tsunami wave.</div>
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soulpixiehttp://www.blogger.com/profile/03598961234333800139noreply@blogger.comtag:blogger.com,1999:blog-4933102018563815212.post-36423533890729134382016-02-21T09:28:00.001+00:002019-06-02T00:24:23.683+01:00No. 293. 'You can't hide from grief.'<div>
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. </div>
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It's then you realise that no metaphorical plaster is ever going to work.</div>
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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.</div>
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You can run, you can hide, but it will always find you. </div>
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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. </div>
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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.</div>
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The plasters are still on the shelf, I may take another one out later...... I never have been good with pain.</div>
soulpixiehttp://www.blogger.com/profile/03598961234333800139noreply@blogger.comtag:blogger.com,1999:blog-4933102018563815212.post-34846110787037153392016-02-10T22:28:00.001+00:002016-02-10T22:28:24.206+00:00No. 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.<div><br><div>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.</div></div><div><br></div><div>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. </div><div><br></div><div>My heart goes out to Simon's family. Their bravery in sharing Simon's story has raised awareness on so many levels. </div>soulpixiehttp://www.blogger.com/profile/03598961234333800139noreply@blogger.comtag:blogger.com,1999:blog-4933102018563815212.post-81113672879782995802016-02-10T20:26:00.001+00:002019-06-02T00:27:30.791+01:00No. 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.<br />
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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.</div>
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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. </div>
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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.</div>
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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.</div>
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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.</div>
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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.</div>
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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. </div>
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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. </div>
soulpixiehttp://www.blogger.com/profile/03598961234333800139noreply@blogger.comtag:blogger.com,1999:blog-4933102018563815212.post-10756877251427707052016-02-01T23:15:00.001+00:002016-02-01T23:46:45.081+00:00No. 289. 'The signs were there.'<div>I<span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"> 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.</span></div><div><br></div><div>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. </div><div><br></div><div>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.</div><div><br></div><div>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.</div><div><br></div><div>MND took many things, but one thing it didn't take, it did take that beautiful smile.</div><div> </div><div><div class="separator" style="clear: both;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4duc2EYISiHm8iIipymk5rml6KsnV-JeKCcGJqFIrX3OVh6ZHG1iBeDua5OZ55mpZ3M0IRqQFuDBFLrvCTiNNmwltpaVAHhWLieLdxv6uqdBwQZVdgKzNXPJaTUBNjTQyng9uKF61yi0/s640/blogger-image--1740237774.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4duc2EYISiHm8iIipymk5rml6KsnV-JeKCcGJqFIrX3OVh6ZHG1iBeDua5OZ55mpZ3M0IRqQFuDBFLrvCTiNNmwltpaVAHhWLieLdxv6uqdBwQZVdgKzNXPJaTUBNjTQyng9uKF61yi0/s640/blogger-image--1740237774.jpg"></a></div> </div><div><br></div><div><br></div><div><br></div>soulpixiehttp://www.blogger.com/profile/03598961234333800139noreply@blogger.comtag:blogger.com,1999:blog-4933102018563815212.post-38270469305624296252016-01-30T23:49:00.001+00:002019-06-02T00:28:38.529+01:00No. 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.<br />
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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.</div>
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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.</div>
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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. </div>
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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.</div>
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<i>I hope they serve you a whisky Mac up in heaven my darling, I shall raise a glass to you tomorrow.</i></div>
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<i>I will love you and miss you always.xxxx</i></div>
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soulpixiehttp://www.blogger.com/profile/03598961234333800139noreply@blogger.comtag:blogger.com,1999:blog-4933102018563815212.post-37246014163623878672016-01-25T22:41:00.001+00:002019-06-02T00:29:54.899+01:00No. 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.<br />
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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.</div>
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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? </div>
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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. </div>
soulpixiehttp://www.blogger.com/profile/03598961234333800139noreply@blogger.comtag:blogger.com,1999:blog-4933102018563815212.post-66095319222497999262016-01-15T10:37:00.001+00:002019-06-02T00:32:12.745+01:00No. 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.<br />
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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? </div>
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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.</div>
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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.</div>
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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. </div>
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Hopefully one day I will learn to smile inside too, for now the smile on my face will have to do. </div>
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soulpixiehttp://www.blogger.com/profile/03598961234333800139noreply@blogger.comtag:blogger.com,1999:blog-4933102018563815212.post-51556302024318033852016-01-06T22:25:00.001+00:002016-01-07T09:23:49.841+00:00No. 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. <div><br></div><div>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.</div><div><br></div><div>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.</div><div><br></div><div>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. </div><div><br></div><div>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. </div><div><br></div><div>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.</div><div><br></div><div>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.</div>soulpixiehttp://www.blogger.com/profile/03598961234333800139noreply@blogger.comtag:blogger.com,1999:blog-4933102018563815212.post-53840326108530366922016-01-04T08:51:00.001+00:002016-01-04T08:55:50.121+00:00No. 272. 'The media and MND.'<div>Just my own opinions.</div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">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.</span></div><div><br></div><div>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. </div><div><br></div><div>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. </div><div><br></div><div>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. </div><div><br></div><div>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.</div><div><br></div><div>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.</div><div><br></div><div>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.</div><div><br></div><div>All those who have/had MND, including my darling boy, are some of the courageous and bravest people I know.</div><div><br></div><div>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.</div>soulpixiehttp://www.blogger.com/profile/03598961234333800139noreply@blogger.comtag:blogger.com,1999:blog-4933102018563815212.post-44937315166020122002015-12-31T17:42:00.001+00:002019-06-02T00:33:59.950+01:00No. 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.<br />
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I truly never really thought that would be our last new year together. We both thought Chris had more time. </div>
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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. </div>
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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.</div>
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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.</div>
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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.</div>
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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.</div>
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<i>To my Christopher.</i></div>
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<i>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.</i></div>
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<i>Fly free my darling, fly free.</i></div>
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soulpixiehttp://www.blogger.com/profile/03598961234333800139noreply@blogger.comtag:blogger.com,1999:blog-4933102018563815212.post-69105604647885042632015-12-28T23:10:00.000+00:002019-06-02T00:35:39.689+01:00No. 269. 'Is it me?'<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">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. </span><br />
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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.</div>
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But then I see.......is it me? </div>
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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? </div>
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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.</div>
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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.</div>
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But then her mind and body are reunited again and she has to feel, she has no choice.</div>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">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.</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">And then I see, I feel, I know.......it really is me.</span></div>
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soulpixiehttp://www.blogger.com/profile/03598961234333800139noreply@blogger.comtag:blogger.com,1999:blog-4933102018563815212.post-91080983933824437512015-12-24T13:05:00.001+00:002015-12-24T16:07:11.692+00:00No 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 (<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">when the kids were young I couldn't go) an</span>d 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. <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">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 breakfast.</span><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">.how I long for those Christmas Eves again. They weren't perfect story book Christmas Eves, but they were ours.</span><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><i><br></i></font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><i>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.<br></i></font><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">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. </span></div><div><br></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">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.</span></div><div><br></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">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. </span></div><div><br></div><div>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.</div><div><br></div><div>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.</div><div><br></div><div>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.</div><div><br></div><div>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.</div><div><br></div><div>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.</div><div><br></div><div>Merry Christmas and love to everyone.</div><div><br></div><div><br></div><div><br></div><div><br></div><div><br></div></div>soulpixiehttp://www.blogger.com/profile/03598961234333800139noreply@blogger.comtag:blogger.com,1999:blog-4933102018563815212.post-19993705189349815042015-12-16T23:24:00.001+00:002015-12-17T00:09:15.962+00:00No 267. 'Welcome distraction.'<div><br></div>I feel like it has been a while since I wrote a blog, but not that long in reality. Life goes on as it must.<div>Going to the charity shop a couple of mornings a week has been going well, the ladies are a nice bunch and they make me laugh. I prefer to work behind the scenes for now though, I don't know why, but I can't face working in the shop yet, but the manager is fine with that.</div><div><br></div><div>One day blends into the next with grief swooping in when it feels like it. It hit badly one day last week and I spent a long while chatting on line with Chloe. I had been thinking about getting a new puppy for a while, Chris left this huge hole in my life and although of course he can never be replaced, especially by a dog, I just felt this need. I wasn't sure if the timing was right as I still have two very old dogs, but I had a feeling a new puppy would be a good distraction for me in many ways.</div><div><br></div><div>On impulse later, I checked out a web site I had been following for a while. I saw some cross breed puppies for sale in Falmouth. I took the plunge and gave the breeders a call. Long story short I fell in love with a little boy pup and picked him up the following week. Chloe helped me name him and we called him Toby. He has been with me almost a week and is nearly 10 weeks old. He is a little handful full of mischief at times, but he is also very bright and very cute. He should be smallish when fully grown which is what I wanted. He really has distracted me and giving him cuddles is very comforting. I am not sure what Chris would say at me getting another dog, especially if he saw what he did to the carpet in the lounge earlier, but I hope he is watching from afar and approving of this new little life who is a distraction for us all.</div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk91j3H9XMAs72qBOo_AaKIRTetHBrLAw_esfzRJcBkGYg_miNbVsyFULUVXC_3S3kTtsTAraLj6hR6g-Hx5QtLJQSbM_w4CVKMidnzrgjR2ZYOqps8haiDyNdOMR2D8Q4VpYH_7hyphenhyphenLTc/s640/blogger-image--1025759273.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk91j3H9XMAs72qBOo_AaKIRTetHBrLAw_esfzRJcBkGYg_miNbVsyFULUVXC_3S3kTtsTAraLj6hR6g-Hx5QtLJQSbM_w4CVKMidnzrgjR2ZYOqps8haiDyNdOMR2D8Q4VpYH_7hyphenhyphenLTc/s640/blogger-image--1025759273.jpg"></a></div><br></div><div><br></div><div>Chloe came home from Brighton last week with Tom and it was so lovely to see her again. She has been terribly home sick this time, especially now and mummy hugs were very much needed by both of us. Chloe and Tom adore little Toby as does Tam. The older dogs are rather more blasé about his presence.</div><div><br></div><div>We are busy planning a nice Christmas and have a family get together to look forward to on Sunday. I know Chris will be here in spirit and will be happy that we are having a proper Christmas, I do know he would have wanted that.</div><div><br></div><div>I went out to a Christmas lunch with some friends in the village too this week. Part of me did not want to go at first, but I was so touched that they asked me that I said yes and was so glad I did, we had a lovely time.</div><div><br></div><div>I miss many things about Chris not being here of course, one of them being able to tell him things. I would chatter away about what I had been up to and he would quietly listen, I do miss those simple things so much. I still chatter away, whether he listens or not I have no idea, but I would like to think he does.</div><div><br></div><div>It is hard to believe it is just over 3 months now since Chris died. The missing doesn't go away or the hurting, but I suppose you do learn to live with it. There is no other choice really is there?</div><div><br></div><div>Anyway, there are a few more firsts to face soon with Christmas looming, but we will face them all together like we always do, as a family.</div><div><br></div><div>Merry Christmas Christopher my darling, I love you and miss you always. The fight continues.xxxxx</div><div><br></div><div>(Last Christmas, precious memories.)</div><div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgW7slSdXOUrSjQ4zjpuhTzke2j0_3zcIZreahLaEhYFAHbocMLtglZ2F8d6y7uLm4v5iLBdcjn8lCCM6OJDq2nZM1tn4EC5qJjnQ-NwzAde4sKiWMzufKb4Rt3v2uQMrcMmG9IZqiBNMg/s640/blogger-image-1672053806.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgW7slSdXOUrSjQ4zjpuhTzke2j0_3zcIZreahLaEhYFAHbocMLtglZ2F8d6y7uLm4v5iLBdcjn8lCCM6OJDq2nZM1tn4EC5qJjnQ-NwzAde4sKiWMzufKb4Rt3v2uQMrcMmG9IZqiBNMg/s640/blogger-image-1672053806.jpg"></a></div></div><div><br></div><div><br></div>soulpixiehttp://www.blogger.com/profile/03598961234333800139noreply@blogger.comtag:blogger.com,1999:blog-4933102018563815212.post-91083610544589790752015-12-02T14:01:00.001+00:002019-06-02T00:37:53.267+01:00No. 266.'The greatest gift.'Sometimes living with MND and dealing with the aftermath, can make you feel like you are drowning in mud. 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After weeks of nothing but numbness I have been smacked in the face by grief big time. I have no idea what set it off today in particular, preparing for Christmas maybe, I don't know. I have been having flash backs all day of the last hour of Chris's life and feeling that kind of guilt that everyone feels when someone dies, wondering if I should have, could have done more. The tears won't stop flowing.</div>
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Some people have said to me that at least when you know someone is going to die you can be prepared, that it is better than a sudden death, but I don't think there is any difference. I didn't expect Chris to die at that moment, that hour, that day and the torture of watching someone you love die slowly in front of you is absolute hell, let alone what they are going through. Maybe it is this month, this special time of Christmas, that has made it feel worse. </div>
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We were all used to Chris working over Christmas when he was well, the cattle still needed looking after,<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> but he went to midnight mass religiously every Christmas Eve (excuse the pun)</span><span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;"> and we had our little routines. He and I always opened up our stockings full of silly cheap pressies before we went to sleep on Christmas Eve and then he was always in around 8am, after having gone out to work at 6am, for pressie opening and would be in again for the Christmas dinner and then stay in for a couple of hours after to play games and stuff. It will be so strange without him here this year and he will be sorely missed. We want to try and have a special day though, even though Chris won't be here in the physical sense, we will lay a place for him at the table and I know he will be with us in spirit.</span></div>
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Little sparks of light can perk you up though. I noticed I had a £20 donation on my JustGiving page, it was from Chloe. She had baked a load of cup cakes and taken them into BIMM. She didn't think she had been very successful as she had trouble selling them, in her words, to 'Tight students.' but to think she went to so much effort, well I couldn't have been more proud if she had raised £2000. I know Chris will have been so proud of her too.</div>
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Special times like Christmas are always going to be difficult, the missing him will always be a bit worse then and the hating of MND multiplies far more than I could have ever thought possible. Two conflicting emotions, deepest love and absolute hatred, but I think it will be love that will be MND's downfall eventually, because out of our love comes the determination that a cure will be found one day. </div>
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I know it won't bring my darling boy back, but to know that no one will have to watch their loved ones die of the cruelest disease on this planet, well that will be one gift I will treasure for ever.</div>
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Meanwhile I will drag myself out of the mud on to 'numbness' beach and wait for the next wave of grief to hit again. </div>
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soulpixiehttp://www.blogger.com/profile/03598961234333800139noreply@blogger.comtag:blogger.com,1999:blog-4933102018563815212.post-28316934915201245062015-11-28T11:46:00.000+00:002015-11-29T00:37:43.309+00:00No. 265. `Time line to diagnosis.`There are a couple of questions I get asked about Chris all the time which are how long did he have it and what were the first symptoms and although I have written about this before, I will list a chronological timeline of his experience with MND, though of course everyone`s is different.<br>
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<u>September 2013</u></div>
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In September 2013 we took Chloe up to Brighton with all her belongings as she was starting uni. Her student flat was at the top of a Georgian building four flights up. Chris carried all her many, many boxes up to the top without a flinch, unlike his rather unfit wife. I think he had a very slight limp, but it certainly wasn't causing him any problems.</div>
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<u>November 2013</u></div>
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In November 2013 Chris drove him and myself up to Brighton to visit Chloe for a weekend. While we were there Chloe and I noticed Chris was lagging behind us and we teased him a bit to keep up. He just joked he was window shopping, again we never thought much more of it.</div>
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Around this time he had started to get some really severe stomach cramps and cramps in the back of his thighs, especially at night, they were really painful and he would wake up in agony.</div>
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<u>December 2013</u></div>
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Over the next month a couple of the men on the farm kept asking Chris what he had done to his leg and the limp had gotten a little bit worse. Around this time we had a water leak on the farm, we didn't know where it was so I had the job of sitting by the water meter while Chris walked the farm turning off the different stop taps along the way to see if we could trace it. While I was grumbling at having to sit in a cold field for an hour or more, I was also worrying a little about Chris as his limp did seem to be slowing him down these days. He did however walk the whole of the farm which is very hilly, testament to his existing physical fitness and determination I think.</div>
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<u>January 2014</u></div>
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We attended a family funeral in early January 2014 I think and all of his cousins noticed the limp and were asking what he had done. He had also mentioned that his hands felt a bit funny, he would shake them as they felt they weren`t as strong. He was finding using tools like spanners a little difficult.</div>
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<u>February 2014</u></div>
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At the beginning of February 2014, late one Sunday evening, someone came to the door to say that there were sheep out on the road. The rams were kept with us and they have gotten through the hedge. Chris hadn't long come in, but he dressed up again and went out to find them. A good while later he came back in quite distressed. He said he thought he was going to collapse on the drive as his legs felt like jelly, it really frightened him.</div>
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I had been nagging him for quite a while to go and see the doctor, but he kept making excuses that he was too busy, this time though he knew he needed to go.</div>
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The next day I made an appointment for him to see the doctor later in the week. When he went I told him to make sure he told the doctor all of the things he had been experiencing like the limp, cramps and weakness in his hands. When he came home he said the doctor told him he had a dropped foot and she arranged for him to have a blood test to check his muscle function and was referring him to a neurologist.<br>
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The hairs stood up on the back of my neck, I had a friend in the US who was a huge fan of Jason Becker, she had told me about him a while back and about how he had ALS and to look him up on line, so I did. I didn't know what ALS was at first, but after reading about him I realised it was the same as MND. His first symptoms were exactly what Chris was getting and I got really scared. I didn't share my fears with him though, I just tried to be positive that hopefully they could find out what was wrong and make him better.</div>
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A couple of weeks later Chris had the results of the blood tests and the GP said she was referring him to see a rheumatologist instead as the tests showed signs of muscle decomposition, CK levels were high, I had no idea what that meant, but I thought that I must have made a mistake, maybe he had something else like some kind of other muscle problem... Phew, so we waited for that appointment to come through. Chris had started to have a couple of small choking episodes too when eating cake, we hoped that was nothing.</div>
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<u>March 2014</u></div>
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In March an appointment came through for Chris to see the rheumatologist at Treliske, meanwhile I had been looking up Chris's symptoms on line. His speech was also a little slurry now and he was having these strange twitches in his neck. I was not happy as all these symptoms pointed to MND and maybe muscular dystrophy, but still I said nothing to Chris.</div>
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The rheumatologist gave him a thorough examination and said she could see festiculations, the twitching, throughout his body. She referred him for a spinal body scan, nerve function and conduction tests and a possible muscle biopsy.<br>
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During the Easter holidays Chris drove Chloe and I up to Newquay airport as we were going to visit a friend and attend a rock concert. Chris was finding it hard to lift his feet off the pedals and he was more tired than usual, though it was always a running joke that Chris was always tired, we just put that down to working long hours. </div>
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<u>April 2014</u></div>
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He had an appointment come through to see the rheumatologist again for May 23rd. Meanwhile in April Chris had the MRI closely followed by the nerve function and conduction tests. They weren't fun as it involved sticking needles in various parts of his body, including his tongue and having electricity passed down them to see how the nerves reacted. The doctor doing this said the results of these tests were abnormal, the MRI was clear, so trapped nerves being the cause were ruled out.</div>
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Chris was still working out on the farm at this time, but I was very worried about him as he had fallen over a couple of times when in with the cattle and by now walking was becoming very hard for him. I would see him coming up the yard and he looked like someone had strapped really heavy weights to his legs, walking was a real effort.</div>
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Another appointment had come through for the 21st of May, but this time to see the neurologist, now I really was panicking and I was slowly drip feeding a little info to Chris about the various things that could be wrong with him. I had also started voicing my fears to Chris's family and our older children.</div>
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<u>May 2014</u></div>
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At the end of April Chris had a phone call to say he was to see the neurologist on May 5th at 8am. The fact that this was a bank holiday didn't bode well. It was here that Chris was diagnosed with MND. One of the worst days of our lives.</div>
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The rest as they say is history and is all charted in my blog. We had hoped at first that it would progress slowly, but that was not to be and he died exactly 16 months from diagnosis and almost 2 years from the first sign of a limp.</div>
soulpixiehttp://www.blogger.com/profile/03598961234333800139noreply@blogger.comtag:blogger.com,1999:blog-4933102018563815212.post-71781221613030031442015-11-01T18:21:00.001+00:002019-06-02T00:43:43.807+01:00No 282. 'Unfinished business.'I wasn't going to share any blogs about grief, it felt way too personal, but 8 weeks on, even though I am still dealing with it, it felt the right time to share something.<br />
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In my own experience so far grief is every cliche that has ever been described, up and down, a roller coaster, heart breaking etc, etc.</div>
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It is in reality all of those things and more. I have felt real physical heartbreak before but this, this is different. I actually feel some part of me has been wrenched from my body, physically and emotionally. I just feel this utter and complete loss, the loss of the man I love and the loss of every emotion and feeling he ever made me feel. The loss of my purpose in life, my daily routine, everything that made us a couple.</div>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">I have lost the man I had been married to for nearly 21 years, my friend, my love, my soul mate and nothing I have ever experience in my life compares to this.</span></div>
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<i>This grief it feels like riding out the most violent wave in tumultuous oceans, but with the calms of the doldrums taking hold for days at a time. When these calms set in you are living in a numb daze. You exist, you live, you do everyday stuff, you smile when others smile, you talk when others talk, but you are detached from your own existence, so numb and so terribly lost. </i></div>
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<i>Occasionally a wave will lift you up, the sun will shine and momentarily you can see positivity, strength, reasons to exist, your children, your family, your friends, all there for you, sometimes you can even feel anger, but with the next breath you are dragged down into the depths, gasping for air, dragged into the most unimaginable pain of grief. Everything seems pointless, logic is lost, everything is lost and all you want is to be with your love. You look into the future without them and see nothing but darkness and emptiness. What is the point to anything, to all you have without them. </i></div>
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<i>How can this ever get better? Yet when you have cried yourself into a tearless drought you are suddenly lifted up again into the doldrums, where you can catch your breath and feel releaved on one hand that you have survived that plunge into the depths of grief, but then know it will not be the last. You try and do something positive, something to anchor you to the here and now, something that will make you feel normal again, but for now it is just a life buoy<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">, you are still adrift, still lost in grief, but for the moment you aren't drowning..... And so the cycle continues.</span></i></div>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">I don't think this will ever change, no matter how much time passes, just the times you get dragged under will become less frequent and the times the sun will shine will become more so. When that will happen though, is anybody's guess.</span></div>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">The thing is I know all of this is normal, the other side of grief for me is love. If you love you will grieve at it's loss, it is inevitable. </span></div>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">Knowing all of that doesn't stop the missing though, the wanting him back, the need to hold him again, smell him again, see his smile again, sleep with him again, hold his hand again, laugh with him again, cry with him again, share my life with him again. How will I ever learn to live without him? even if the grief subsides, he still won't be here. There will still be this emptiness, this complete and utter void. </span></div>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">I know we have to learn to live this loss, but at this moment in time I can't quite see how. </span></div>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">Then there is the spectre of MND that forever hangs in the air, like an unwanted fog that won't clear. I do not have the strength to fight it at the moment. I want to go into battle at full strength, so let's just say for now that MND and I........well we have unfinished business.</span></div>
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soulpixiehttp://www.blogger.com/profile/03598961234333800139noreply@blogger.comtag:blogger.com,1999:blog-4933102018563815212.post-61726132275262725072015-10-25T09:50:00.003+00:002015-11-09T21:37:58.817+00:00No 279. `Update.`I guess the final end to Chris`s story is that the farm was officially sold on October 8th 2015. I am glad in a way he was not here to witness the finality of it all. It was heartbreaking enough to see the stock and machinery be sold.<br />
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Although I am curious and in a way excited to see the changes that will be made to the farm, as the new owner is investing much in upgrading the house and yard buildings, I again think Chris would have found that very hard.<br />
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He would have been pleased to see a new herd of cattle though now grazing the fields of Gwarth-an-drea.<br />
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You stole so much MND, not just the love of my life. I will hate you forever.soulpixiehttp://www.blogger.com/profile/03598961234333800139noreply@blogger.comtag:blogger.com,1999:blog-4933102018563815212.post-4680032798017223372015-10-08T23:05:00.001+01:002019-06-02T01:02:41.900+01:00No. 272. 'I will take life.'<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">Well that is it, after cock ups and delays Tom's probate finally came through which allowed the completion of the farm sale. The new owner seems a lovely man and will farm cattle on it and love it which is all we could have wished for really, apart from never having MND enter our lives of course. I am now as they say, on my own, in more than one sense, it is a little scary, but I am sure I will survive. </span><br />
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Since Chris died I have heard of 4 more people who have died from MND, people I have gotten to know over the past 16 months. Every single one is a tragedy and every single one is heartbreaking. It is the inevitability of MND which is so scary and cruel, let alone what it does to a person. Once you are told, 'I am sorry, you have MND' you are given a death sentence, not quite knowing when your end will come, but knowing it will all the same, while that damn disease steals your physical abilities from you bit by bit for good measure. </div>
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For now I have tried to hide away from most of social media, I am not strong enough at the moment to share other's grief, it is hard enough dealing with my own, but I will come back fighting, I am not sure how yet or when, but I will. </div>
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I am off to spend a few days with my youngest next week, who needs her mum, she does not find sharing her grief easy, we are all different in that respect and sometimes she tells me off for being so open. We have a fun weekend planned, though it will be strange for me to be up there without Chris. We first noticed something was wrong on our second visit to see Chloe two years ago in November, he couldn't keep up with us as we were walking around and Chloe and I teased him about it. Chris just said he liked window shopping, little did we know. It is hard to believe that a month earlier he had been carrying all of Chloe's belongings up 4 steep flights of stairs into her student bedsit, up and down, up and down, just one or two flights nearly killed this little dumpling.</div>
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The days seem very long now, I have no focus and still seem to wander around looking for something, not knowing what. I am not weeping and whaling 24/7, I am mostly numb, with just such a sense of loss and emptiness. Even now I cannot quite believe Chris has gone. The nights are the worse, I miss him the most then, during the day I can find distractions even if I am like a butterfly flitting from one thing to the next.</div>
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Well the ripples of MND spread far and wide, an era truly has ended for us, but life has to go on, I owe my darling boy that much, else him dying would be an even bigger waste. On the occasions I think 'What is the point.' I make myself think everything is the point. Chris wanted to live with every fibre of his body, but that choice was taken from him, I have the choice to live and for my boy I will take life and live it for him as well as myself. He would not have wanted it any other way.</div>
soulpixiehttp://www.blogger.com/profile/03598961234333800139noreply@blogger.comtag:blogger.com,1999:blog-4933102018563815212.post-82903106856372447922015-10-03T19:23:00.000+01:002019-06-02T00:59:52.650+01:00No. 270. `What is grief?`What is grief? I should be able to say, I am living it, but I don't really know. It is sadness, it is loss, it is tears, it is anger, but at the moment it is total numbness, I do get tearful, but mainly at night, that is the worst time. I hate going to bed, it would be so easy just to sleep in the lounge, but I make myself go to bed. The loss, it is the hardest then, sleeping in a big bed meant for two, an empty space that should be filled, quoting my daughter, 'Deserted bed sheets haunt my night.' that is so hard to live with. I have photos around me, I have my photo pillow to cuddle. I have my mementos, the silly sentimental things. I have a spotted hanky that Chris had with him when he died and I can't part with it, I tuck it in my waist band during the day and I hold it at night. I get panicky if I drop it, how weird is that? It is a link I suppose, a bridge from here to beyond the veil.<br />
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Yesterday I felt crap, I wanted to crawl under a rock and stay there and wait for this dark cloud to pass. My head was thick and heavy and I was feeling pretty low and sorry for myself. I took to my bed and wallowed in my grief.<br />
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Today is another day and it is 4 weeks today since Chris died and I miss him so bloody much, he should be here with me, it is just not fair.<br />
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It was his wish though to have some of his ashes scattered on the farm, so some of the family joined me and we walked out to the river today and I scattered them on the hillside there. It is strange, I felt so bad yesterday, but today I was numb again, it felt so weird, there I was scattering some of the remains of my boy and I felt nothing, yet I cannot bare to let go of a hanky of his, this grief thing is very strange.<br />
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I had set up a bereavement group, rather naively, not knowing so many would want to join and I realised that I am not really in a place to help others yet or take on board their own pain. I felt bad about that, but it is enough dealing with my own and my children`s grief at the moment. I am glad I set the group up as it was obviously sorely needed and thankfully someone else has taken on running it, but for now I need to step back and just be a bit selfish.<br />
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I guess we all need to take grief one day at a time and ride that wave. It is horrible when it hits for sure, but I am certainly not alone with it, I wish it weren`t so, but I`m not.<br />
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Tomorrow is another day, let`s see what it brings.soulpixiehttp://www.blogger.com/profile/03598961234333800139noreply@blogger.comtag:blogger.com,1999:blog-4933102018563815212.post-41658724110614759342015-09-29T08:29:00.001+01:002019-06-02T00:56:30.786+01:00No. 266. 'Explode.'<i>Do not panic, no cushions, animals or structural buildings were harmed after this blog, I just ate a great big bowl of cereal instead.</i><br />
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Today I feel like I want to explode, I want to scream and shout and curse and smash things, how dare this f****** disease take my husband how dare it. What the hell did he ever do to deserve that eh? He was sweet and gentle and hard working and I never heard Chris say a bad word about anyone, he put up with a moaning Minnie for a wife who is as clumsy as hell and he was so patient and kind and so very brave.<br />
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Oh this rage that is simmering, if I could get my hands on this disease, this hateful, cowardly, vile thief of a disease, I would stamp on it, stab it, punch it, I would strangle it while it too gasped for breath, I would let it get a taste of it's own medicine. </div>
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Why, why, why my darling boy, why?? Really....what the hell did he ever do, but be a good person. I don't understand the randomness of it, it is so very cruel.</div>
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None of what I have means anything without him, it was his not mine, it is all so very wrong.<br />
This disease is a *#$*#^^**#$€#¥¥$%#~~*}. And no that didn't help, but you get the idea. </div>
soulpixiehttp://www.blogger.com/profile/03598961234333800139noreply@blogger.comtag:blogger.com,1999:blog-4933102018563815212.post-88871947482297611442015-09-20T09:15:00.000+01:002015-11-10T09:37:35.291+00:00No. 259. ` Farewell for now.'<span style="font-family: "arial" , "helvetica" , sans-serif;">So yesterday we said farewell to my darling boy. It was a surreal day where I was carried along on that tsunami wave which dipped in and out of reality and emotions.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I was up early, hoovering and tidying, awaiting family to gather. My brother and his family came down from West Sussex and I also had friends who had traveled down over night to attend. As guests arrived I poured out the malt and we had a small toast to Christopher (<i>hope that was OK my darling?</i>). I was doing fine until the hearse arrived with my darling boy and then I saw our flowers for the first time, I lost it then. Denise had the most amazing flowers made from the siblings, it was a TR7 <i>( I bet you loved that eh Chris?) </i>It was fantastic and so fitting. I was thrilled to see my cousin Christine and her husband Mike had made it too.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">We gathered as a family behind the hearse for the short walk to the church, Christopher's beloved Leyland tractor led the hearse to the church and the Matbro handler stood in the front meadow with it's bucket held high in salute to the one who drove him the most.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">I found the whole thing so emotional I could hardly breathe and I walked in first after Christopher with Tam and Tracey holding my hands. Jordan was one of the bearers as was Kevin, Chris's brother. Jem, Chris's closest friend plus Vivian and Peter, other friends, we're also bearers. The church was packed and I just couldn't look at anyone. That was my boy there in that box, this really was time to say goodbye and I couldn't bare it.</span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">Two lovely ladies from the church who knew Chris well read a poem and the reading. I wrote the eulogy which the Vicar read and Kevin read an emotional poem followed by a few words of his own. Chloe had always wanted to sing for her dad, but she wasn't sure if she could do it, so we didn't put it on the order of service. She changed her mind what she wanted to sing on the way home from the airport on Wednesday, she decided she would like to sing 'Wind beneath my wings.'. We downloaded a backing track and the lyrics when we got home and set up her PA equipment in the church on Thursday. She gave the vicar the sign that she could sing during the service and went ahead with Tom in control of setting the backing track going. I can honestly say I have never heard Chloe sing so well. I thought there would be nerves, but there wasn't. She even made grown men cry. (<i>I bet you had a few tears too eh my darling watching over her?) </i>Even the vicar showed signs of emotion when she read some words about Chris, she knew him well too.<i><br /></i></span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">Chloe did lose it a bit after, but that was understandable. Everyone said they had never been to such a moving service and that it was a fitting send off for my boy. </span></span></div>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">After greeting people outside and thanking them for coming, we returned home for a quick freshen up and then Denise and Harold took Chloe, Tom and myself to the wake at The Camel Centre and yes, there are actual camels there right outside of the window.</span></div>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">The wake was a blur really, with so many people wanting to talk to me. I did find that hard as I would rather hide in the background than be the centre of attention, so I constantly reminded myself that everyone needed to share their love and memories of Chris and for Chris and that was important. The Oates family did a wonderful job of the catering, with plenty to eat for everyone. Kevin set up the slide show that I had prepared and people watched with amusement I think, seeing Chris as a baby and small child as well as a grown man.</span></div>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">Later was the final part of the farewell, the journey to Camborne crematorium. I drove Chloe and Tom there and Tam went with Jordan and Tracey. It was just close family there and it was a very short service, but it still was a very emotional experience and Chloe in particular really broke down, something she needed to do. Tony, from Pendles said he would drop the flowers back to our bungalow for us.</span></div>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">We all as a family were then treated to a meal at a nearby restaurant by Denise and Lucille.</span></div>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">We then traveled back home, the flowers were there to greet us when we got back. The attendance cards were waiting there too and over 200 people attended apart from us family, what a fitting tribute for my boy.</span></div>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">So that was it, the final farewell to my darling boy, <i>(for now anyway my darling, till we meet again</i>.)</span></div>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">This morning life had to carry on. I was up a 5am to take Chloe and Tom to Newquay airport as they had to get back to Brighton. It is more than a hour trip to get there and we left in the dark, hitting patches of fog along the way. On the way back the sun had come up and the mist settled low on the roads and had an ethereal feel.</span></div>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;"><i>OK Christopher my darling, you never did tell me how I was supposed to live without you, I guess now is when I really begin to learn. I will love you and miss you always my boy, this was not how it was meant to be. </i></span></div>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;"><i>Fly free my darling, fly free. ❤️</i></span></div>
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soulpixiehttp://www.blogger.com/profile/03598961234333800139noreply@blogger.comtag:blogger.com,1999:blog-4933102018563815212.post-48249018796777845312015-09-19T16:00:00.000+01:002020-05-05T09:51:10.109+01:00No. 258 .'Stardust.'<div>
I feel I am being carried along on this bereavement wave, not quite knowing where I am going or what the hell I am doing. </div>
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I woke really early again, Chris is still the first thought on my mind when I open my eyes and the last before I sleep. I cuddle his pillow all night, it gives me some kind of comfort.<br />
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Chloe came home yesterday with Tom, it was so good to see her, we cuddled so hard at the airport and shed some tears. She feels so guilty that she wasn't there when Chris died, but I don't think he would have wanted her to see that. She misses him terribly. I gave her his wedding ring, it will be a special keepsake for her, something of her dad's. I will get her a chain so that she can wear it around her neck. She said she will never take it off.</div>
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Chloe is so full of anxiety and isn't sure if she can sing tomorrow, but that is OK, it will be a difficult day for all of us, we have had lots of hugs and cuddles and talked about Chris loads.</div>
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A strange thing happened last night. I was very restless all night, I woke suddenly and all of a sudden I saw this huge photographic montage of photos of Chris, so many photos, it was right there in front of me and then all the photos separated and drifted apart and slowly each one burst in stardust. It wasn't a dream I swear, it was real, or maybe I imagined it, I don't know, it seemed very real. It didn't frighten me and it was strangely comforting, I can't explain it, but I felt like my darling boy was there.</div>
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Chloe didn't sleep, she is so full of fear and anxiety about tomorrow. It will be a difficult day for us all, saying farewell to my boy, but I hope he will feel all the love that there is for him. She decided she wanted to see Chris. It was tough for her and she did cry, but I think with time she will be glad she went. I said my final farewell to my boy in there too. It is strange, I feel more disbelief in some ways about all of this than I did the day Chris died, so many conflicting feelings and emotions.</div>
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Later this afternoon we took Chloe's PA system down to the church and set it all up. Chloe changed her mind about which song she wanted to sing, even though she may not be able to sing it anyway. It will not be on the order of service, so if she changes her mind it will not matter a bit.</div>
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I need to try and get some sleep, tomorrow will be a long and emotional day, I actually feel nothing at the moment, it is all like one bad dream. I will hate that walk into the church with everyone staring at me, at us. The funeral service, the Wake, the cremation service, so many farewells, so many goodbyes.</div>
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Nothing will bring you back, nothing will fill that hole in my heart. </div>
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Look what you have done MND, look what you have stolen, you have no remorse, you have no compassion, just a selfish greed to steal life. I hate you so much.</div>
soulpixiehttp://www.blogger.com/profile/03598961234333800139noreply@blogger.com