No. 271. 'Reflections.'

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

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

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

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

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

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

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

To my Christopher.

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

Fly free my darling, fly free.

No. 269. 'Is it me?'

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

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

But then I see.......is it me? 

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

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

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

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

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

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

No 268. Merry Christmas and keep fighting.

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

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

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

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

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

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

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

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

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

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

Merry Christmas and love to everyone.

No 267. 'Welcome distraction.'

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.

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.

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.

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.

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.

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.

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.

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.

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?

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.

Merry Christmas Christopher my darling, I love you and miss you always. The fight continues.xxxxx

(Last Christmas, precious memories.)

No. 266.'The greatest gift.'

Sometimes living with MND and dealing with the aftermath, can make you feel like you are drowning in mud. It can seem hopeless and exhausting.

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.

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. 

We were all used to Chris working over Christmas when he was well, the cattle still needed looking after, but he went to midnight mass religiously every Christmas Eve (excuse the pun) 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.

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.

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. 

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.

Meanwhile I will drag myself out of the mud on to 'numbness' beach and wait for the next wave of grief to hit again. 

No. 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.

September 2013

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.

November 2013

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.

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.

December 2013

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.

January 2014

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.

February 2014

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.

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.

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.

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.

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.

March 2014

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.

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.

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.

April 2014

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.

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.

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.

May 2014

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.

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.

No 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.

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.

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.

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.

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. 

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. 

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, you are still adrift, still lost in grief, but for the moment you aren't drowning..... And so the cycle continues.

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.

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. 

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. 

I know we have to learn to live this loss, but at this moment in time I can't quite see how. 

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.

No 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.

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.

He would have been pleased to see a new herd of cattle though now grazing the fields of Gwarth-an-drea.

You stole so much MND, not just the love of my life. I will hate you forever.

No. 272. 'I will take life.'

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. 

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. 

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. 

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.

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.

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.

No. 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.

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.

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.

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.

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.

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.

Tomorrow is another day, let`s see what it brings.

No. 266. 'Explode.'

Do not panic, no cushions, animals or structural buildings were harmed after this blog, I just ate a great big bowl of cereal instead.

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.

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. 

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.

None of what I have means anything without him, it was his not mine, it is all so very wrong.
This disease is a *#$*#^^**#$€#¥¥$%#~~*}. And no that didn't help, but you get the idea. 

No. 259. ` Farewell for now.'

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.

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 (hope that was OK my darling?). 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 bet you loved that eh Chris?) It was fantastic and so fitting. I was thrilled to see my cousin Christine and her husband Mike had made it too.

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.

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.

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 bet you had a few tears too eh my darling watching over her?) Even the vicar showed signs of emotion when she read some words about Chris, she knew him well too.

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. 

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.

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.

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.

We all as a family were then treated to a meal at a nearby restaurant by Denise and Lucille.

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.

So that was it, the final farewell to my darling boy, (for now anyway my darling, till we meet again.)

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.

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. 

Fly free my darling, fly free. ❤️

No. 258 .'Stardust.'

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. 

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.

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.

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.

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.

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.

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.

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.

Nothing will bring you back, nothing will fill that hole in my heart. 

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.

No. 248. 'To my boy.'

Good morning my darling Boy. When I woke this morning I thought I could not hear you breathe and then I put my arm across and remembered that you are no longer here with me and that heavy sadness came over me again. I miss you so much my darling, so very, very much.

I was so tired yesterday, lack of sleep and grief made me so very tired. Denise and Kevin were so sorry to not have been here when you left us, but they were soon after. Jordan, Tamara and Tracey were here too. We have all supported each other in our grief at losing you. I didn't know it would be so quick, when I told you you would get sleepy I thought it would be just that, I did not know we would lose you so soon. The doctor told me you were struggling my darling, your lungs just couldn't get enough air in, you had suffered enough, your body needed peace.

It was so hard telling Chloe my darling, to hear her cry on the phone and not being able to hug her, it was so hard, she was with Tom at least.

Jordan has been so good Chris, he phoned Jem and Fred for you, I could hear him, it was very hard for him, but he did it all the same.

I went to bed in our own bed last night, the room felt empty and cold without you. I took that special pillow that you were lying on and put it in the bed, I could smell you and hug it and make believe it was you. I found myself wanting your things. I keep your blue spotted hankie with me, it helps me feel close to you, is that daft.? I have put all your things safe my darling, I have thrown nothing away, they are all still here for you.

We had such different tastes didn't we my darling, opposites in so many ways, but recently we would love to watch Casualy and Holby City together snuggled up in bed. I took a whisky to bed last night, partly to help me sleep and partly in honour of you, to raise a toast to you. So many raised a glass to you , that moved me so much. I fell asleep watching Casualty, at least sleep came to me then.

I have been over whelmed my darling at the love and support people have shown who don't even know us, so much kindness and love, I guess your story touched people so much. I wrote a blog yesterday too, I needed to get it all down, I was always weird like that wasn't I Chris? I talk way too much. I couldn't believe this morning that it has had over 1000 views, I don't know that many people Chris, I don't understand, all I do is share my thoughts. 

I am still lost without you my darling, the void you have left is so deep, how do I cope with your loss? I want you back so much. Tam got into bed with me this morning and we hugged and cried and I found that video of you I did last year when you were merry on a whisky mac, do you remember? I love that so much because you told me you loved me and you were so happy and smiling in spite of everything, but that was you Chris, that was always you.

I chatted to Chloe, she said she is numb, I hope she will be OK, you know how she bottles things up. She wants to sing at your funeral my darling, can you believe that, I thought she would find it too hard, but that is Chloe, that is how she expresses things, though music. 

Anyway, sleep well my darling, I feel you with me in my heart.

I will love you always.

Xxxxxxxxxxxxxxxxxx

No. 247. 'The blog I never wanted to write.'

This is the blog I never wished to write, oh dear Lord I never wished this day to come, but write it I must. I promised myself I would see this through, no matter how hard. It is an honest diary of our last night together, it may upset some people, but this is the end of this journey for us. MND has won.

Why am I writing it so soon? Well I don't want to forget anything for a start and because I need to as always and because I don't want to keep reliving and telling it over and over again. Also I had some much needed time to myself today, time to sleep, but it would not come to me, so I found solace the way I always do, by writing my blog.

I am lost, I am stumbling, I am grieving for my darling boy, although I am glad his suffering is over, I cannot believe he is gone. my heart is broken, I want him back in my life so badly. Tiredness and tears weigh heavy on me, I haven't slept yet. I grab at any little piece of Chris I can find for comfort. I need to feel him near me.

It is 16 months to the day since Chris's diagnosis.

9pm 

I gave Chris his nightly medications, Mucodyne, Oramorph and diazepam and then set up his night feed. He tried really hard to sleep, but he had struggled all day with his breathing. His sister had come to see him earlier and when she went to leave he asked her to stay as he felt something was going to happen. I asked him `Like going to die?` and he said yes. He was due a dose of diazepam which I then gave him and that calmed him somewhat. I can't bare to think of him being so afraid.

So many times the last few days I have thought Chris was going to die. As I lay there on duvets piled high on top of the sofa, so I may lie close to him, I wondered yet again if he would make it through the night. I cried many tears and told him how much I loved him. I said "We have had a good marriage haven't we?"and he just managed to say "More than good." To hear his shallow gasps for breath was just too much to bear. Although he could barely speak now, he was aware and could squeeze my hand a little when I squeezed his.

Life has been put on hold as I have barely left his side. Other things can wait, they do not matter. I need to cherish every second we have left together, to be as close to him as I am able.

1am 

I gave Chris another dose of Oramorph. I couldn't sleep, I read, I went on my iPad, I read again. I couldn't settle watching him struggle. I raised the bed head, I lowered the bed head,  I rearranged the pillows, but he could not get into a position where he could be comfortable. We dozed a little.

2am 

Chris was getting distressed. I gave him 1/2 a lorazepam tablet to try and settle him, it settled him for a very short while, but it didn't last long.

3am

I dialed 111 and was referred to the out of hours GP. About 15 minutes later one rang me. I explained the situation and that Chris was in respiratory distress. They said they would get a GP there in an hour, but that I could give him another 10ml of Oramorph meanwhile. While waiting I took his temperature, he seemed hot, it was up a bit, I was worried he may have developed pneumonia, I told him and asked if he wanted to go to hospital, he managed to shake his head and say no. I said OK.

4.10am

The doctor arrived. He went over to Chris and asked him if he was distressed and he said yes. He check his SATS which were 54% and his pulse was 122. I told him I had the driver meds here. He explained that he couldn't set up the driver, but that the district nurses could do it in the morning. He did say he could give Chris diamorphine and medazolam via injection from the meds in the driver pack. He explained to me that this would be a big step up in his palliative care and it would escalate things, but it would ease his distress. I said I understood and that Chris could not be allowed to struggle any more. As the GP was about to inject him Chris called out his sister's name so I went and phoned her to come, she lived an hours drive away. I also phoned my son and his wife to come over.

He had just injected Chris when I arrived back. I told Chris he would feel very sleepy now and that I loved him and that every one loved him and that I would love him for ever and he grunted an acknowledgment at me. I just thought he would be heavily sedated. The doctor said he would wait 15 minutes to make sure he was comfortable. 

Chris drifted off and seemed less distressed, the GP initially thought things would take a while, even talking about the driver being set up in the morning. I then also rang his brother, I couldn't get an answer so Jordan went off to get him, he lives 2 miles away. 

Chris suddenly changed, he had felt quite hot, but his pallor changed and he felt cooler. The GP called me aside. He said Chris's SATS were very low, his body was fighting to get oxygen around the body which was why his heart rate was so high. He explained the the meds would relax Christopher, but this would also mean his body would stop fighting and that could happen quite soon and he could go quite quickly. Oh my God, so soon. He told me to go to him. He reassured me that he would slip into unconsciousness and be unaware. Tamara, Jordan and Tracey were there, Denise and Kevin hadn't arrived yet. I held Chris`s hand and I could see his finger nails were already blue.Within 15 minutes at around 4.45am Chris took his last breath. I won't lie and say it was peaceful, but it was a lot more peaceful than it would have been. I kissed and hugged my boy and we all cried, oh boy did we cry, Jordan cried like I have never seen him cry. Collective grief at the loss of this wonderful man.

Kevin arrived not long after and then Denise. So many tears were shed, so many tears and then all I could think of was how do I tell Chloe? My only comfort during this time was how peaceful Chris suddenly looked. The pain had gone and he just looked like he was sleeping.

I didn't know what to do, although it was expected it was still a shock, it happened so quick. All I could think of were people I needed to ring, thank God for the family.

Time ticked by so slowly, so many more tears, so many cups of tea, there was disbelief, shock, pain, so much pain, I wanted him back, I wanted him back.

Then the phone call to tell our darling daughter that her daddy had died, oh what an awful call to make, to hear her tears and not be able to comfort her. I just wanted to hug her close to me. 

My day has been a daze. I am lost, my life revolved around Chris, I have no idea what to do.

How will I live or breathe without my boy in my life? I will love him forever. He has left one enormous hole in all of our lives.

No. 246. 'This wretched disease.'

The carers said last night that Chris had developed a small pressure sore in his coccyx area, I was gutted about that. The district nurse won't come out until tomorrow when the air mattress arrives. The carers and I have jiggled around with pillows and positioning, but Chris's positioning is also crucial to him being able to breathe too, so it is hard to get the balance right.

Chloe and Tom went back today, they have a wedding tomorrow and we both felt they should go, plus work beckons for them. We are glad Chloe came home for a few days, she was able to spend some quality time with Chris. She was a little sad he couldn't say I love you properly any more, but we developed hand signals instead. Chris never did get his head around the 'Eye gaze' and being a complete technophobe didn't help. Now he is so weak and sleepy I don't think he could focus his eyes properly if he tried. I have 'Verabally.' on my iPad which helps if I really can't understand him. 

The chest and diaphragm spasms have been happening more frequently and they really scare Chris when they do. I usually dissolve 1/2 a lorazepam in a bit of water and place it under his tongue and this usually works very quickly. He also has diazepam and I gave Chris a morning dose yesterday, but it made him so sleepy. I spoke with our GP and he recommended giving Chris diazepam twice a day along side the Oromorph. I had already talked to Chris and we both felt it is better for him to be sleepy and comfortable than more awake and getting more spasms which scare him, so diazepam twice a day it is along side the Oromorph. Chris woke at 4 am in distress too so I gave him some more Oramorph then which helped.

Chris has also been biting the inside of his mouth which he doesn't know he is doing and I only discovered it doing his mouth care. Oral thrush is being troublesome too, so the GP is prescribing a different fungicidal medicine that will go down his PEG, hopefully that will help.

I get asked quite often how I am and strangely most of the time I'm OK. I feel I am running on auto pilot, getting on with things in my usual clumsy way. Everynow and then the tears flow, which is everyday now. I spend a lot of the day just sitting beside Chris. I'll read to him if he wants, mostly he just wants to sleep. I'll try to reassure him when he gets scared. 

And boy has Chris has been scared a lot to day. He really is struggling to breathe and that really does fighten him. I have been told there is no upper limit to the Oromorph dosage so when he asked for more I gave him another 5 ml. I know the body does get used to it. The GP said to me that I probably feel helpless and I do. To watch someone you love die slowly in such a cruel way is beyond hateful. My heart breaks to watch Chris suffer like this. 

I am sitting here writing this holding Chris's hand. The extra 5ml of Oromorph has kicked in and he is having some kind of sleep.

I don't want to lose my husband believe me I don't, but watching him like this part of me wishes MND would do it's worst and leave him be. How much more will this wretched disease make him suffer?

I hate f*****g MND so much, in fact there has yet to be a curse created that is strong enough to vent my anger or describe my hatred for the vileness that is motor neurone disease.

No. 245. 'Stumbling.'

Today has been a difficult day for Chris. He has been getting more spasms and his breathing is that little bit worse again. He did not want to move from the bed this morning, so the carers saw to his needs there. 

I have noticed he has developed a weakening on the side of his face, the same side where he has weaker neck muscles. He has started to drool a little saliva too on that side and his eye weeps, all part of the MND.The GP is coming out this week and we will see what he recommends for that. Everyday he is a little bit worse, today he felt pretty miserable.

His palliative care nurse came this morning and she said to give the Oromorph as needed and he could have a lorazepam along side the diazepam if needed too. One is more fast acting, one longer acting and this will probably help with the spasms a bit. She also said that she will get a prescription prepared for us to keep at home for a driver syringe to administer medication if and when needed. We talked about prognosis and stuff, always a tough conversation.

I asked Chris if he wanted the vicar to come and see him. His faith is very important to him, so I rang her and she came out and spent some time with him. I think it helped him a bit. I think he was in need of some spiritual support.

People say things to me like I am brave, strong, blah, blah, that's not me, believe me I am none of those things. I spend half the day in a stupor and the other half crying. I stumble through Chris's care like I stumble through life, for ever making mistakes. The one blessing is that he is very tolerant of me. If I have ever given the impression that I am some kind of Saint, then that could not be further from the truth. I am one scared, already grieving wife, who is watching the love of her life be taken from her in the most cruelest of ways. I do my best as everyone who has ever been in this position does. It is not a choice, it just is what it is.

So do not ever take from my blog that I am perfect, I am not, nor do I ever wish to be. I just do what 5000 plus others are doing as well at this moment in time here in the UK alone, caring for their loved ones who have MND in the best way they can, each and everyone of us hating this disease with every fibre of our bodies.

No. 244. 'Good versus bad and MND.'

I have heard people say recently that the world is a bad place. I think it has always been a bad place if you look back through history, but it is and always has been, a good place too.

The difference today is that we hear it all. The media etc always concentrates on the bad stuff and rightly so most of the time, it is hard to hide from it in this global, internet based world, plus the good stuff doesn't always make good copy.

I have had bad things happen to me over my life, I guess we all have in some way, but I have been touched much more by love, compassion and friendship, so much so that it has not allowed the bad stuff to control my life.

Recently with Christopher's diagnosis of MND, we all as a family hit rock bottom. As bad things go, as far as we are concerned anyway, this takes some beating. I chose to write a blog right from the beginning of Christopher's diagnosis. It was just for me to start with, as a record. I chose to do it on line as I am rubbish at keeping a diary and losing them. I also felt I owed it to Chris to not forget a single second of what he will have gone through. One day, on a whim, I thought I would share it on Twitter, I thought maybe it might raise some awareness as so many people I know knew nothing about MND and slowly more and more people started to read it. I couldn't understand why at first and even now I question why I bare my soul and our life for others to read about. Although I still do write my blog just for me, I am now aware I probably write it for others too. I have heard from the loveliest people who have or are walking this path also and they say it helps them to know they are not alone in this nightmare. I am saddened that others have to go through this too, but humbled beyond belief when people say such things to me.

I am sure there are people who question why we are so open about this disease, especially on social media, but you have to give in order to receive. By sharing our lives with MND I have come to know some wonderful people and more recently I have had such kind messages sent to me from people I don't even know. Messages full of love and support and prayers for Chris and us as a family.

They don't know us, but mostly we share a common pain, this awful disease MND.

So when people say the world is a bad place, of course it is sometimes, bad things will always happen, but it is a bloody good place too, so although we are living this vile nightmare at the moment, I am thankful to the bottom of my heart to have felt so much goodness and love in our lives. 

Open your heart and the love will find you.

No. 243. 'To the edge and back.'

This hateful disease likes to take you to the edge and back so many times.....and leave you dangling with a fear you have never felt before.

Chris has been deteriorating daily at a much faster rate for the past month now. Everyday he is that bit worse, especially his breathing..oh that scares me the most, hearing him struggle to breathe. It is not a bubbly breath accompanied by a cough, just a weak inhalation and expiration, a constant, laboured grunt. It is one that spasms and frightens him so much and now it seems it his diaphragm that is giving him spasms. A dissolved lorazepam in a drop of water placed under the tongue seems to help with that, but it is still scary for him.

Yesterday was the first day Chris did not want to get up. He is so very weak now. Yesterday he truly scared me. Up till now whenever I ask him if he is OK he has said yes, yesterday he said he didn't feel too good.

He wanted to see his sister so I gave her a call. I updated Chloe as I was a little scared we were losing him. I think I must have really frightened her as she wanted to come home, she was visiting her boyfriend's family. They kindly sorted the insurance out for Tom to drive the car and they left from Surrey straight away. Chloe literally turned up in the clothes she was wearing and nothing else! Knowing she was coming home perked Chris up no end though. It was just what he needed.

The carers came in the morning and didn't pull Chris around too much. They spent the day trying to get the district nurses to come out with a blow up ripple mattress, which they did in the afternoon. Two of them came, one blew it up. They then left and said the carers could put it in later, not quite sure why they couldn't do it. They didn't check his pressure areas or anything. 

My daughter-in-law Tracey stayed with me during the day, I confess I spent most of it holding Chris's hand and crying while he slept. Around 5ish Chris said he needed the loo, Tracy helped me with the hoist and thankfully he managed to go. I was a little concerned though as it looks like he is developing a pressure sore on his bottom!! I wasn't happy to see that. I applied some Conotrane cream. He also wanted a wash and to do his teeth and then I teased him as I realised he wanted to look nice for Chloe. While Chris was on the loo Tracey put the blow up mattress on his bed.

When the carers came I told them to check Chris which they did. They said they would bring some special stuff in the morning that is like a second skin to protect him. How typical these things happen on a bank holiday weekend. This air mattress isn't likely to get here for a couple of days yet. They made Chris comfortable and also used those lollipop things to freshen his mouth.

Chloe arrived home and Chris was so pleased to see her, it really made him smile.

Chris has always written a diary since he was a child. It isn't full of heart felt emotions, just what happened during the day. For the first time he asked me to write his diary for him. Even that is too much of an effort for him now.

I wake so many times in the night and panic, is he still here, is he still breathing? I am on edge. How long does Chris have? who knows. Sometimes it feels like hours, other times days, maybe still weeks yet, you can never tell with this beast of a disease. All I know is the progression is now relentless and it is scaring the crap out of me.

One minute I am praying that my boy doesn't leave me and then I look at him sleep with his laboured breath and I just want his suffering to be ended. Such a contradiction of emotions.

Then I think, 'Let's just get through this, one day at a time,'.

Lastly though, I asked my Facebook friends to say a prayer for us yesterday and they did in abundance. I don't have much of a faith these days, but it was so heart warming and comforting to feel so much love and support from them. Thank you to all of them.

No. 243. 'A light bulb moment.'

OK, Chris hasn't been so good today. I gave him his Oromorph around 2.30pm as usual. This helps his breathing by relaxing him. He was also thirsty so I put a glass full of water down his PEG too.

Not long after, he started one of his mucous episodes, which involves him choking then gagging before getting rid of the build up. I started using suction on him and as sometimes happens the gagging caused him to vomit. He went on to bring up the drink I had given him and quite possibly the Oromorph too. I hate it when he vomits, because he usually also aspirates some of it and that causes more choking. Anyway, we dealt with this as we do everyday and after about 30 minutes he settled down. I was reluctant to give him more Oromorph just in case he had absorbed the earlier dose.

Just before the carers came for their evening visit Chris couldn't catch his breath, he started panicking and asked me to dial 999. I told him the ambulance crew couldn't do anything and to try cough assist and suction first. This cleared some more mucous. I suddenly thought that maybe Chris did miss a dose of Oromorph, I calmed Chris down and said he was probably struggling and panicking because he needed some medicine. As soon as the carers got him into bed I gave him his Oromorph and diazepam. Within half an hour Chris had relaxed and calmed down. The medication doesn't suddenly make him breathe better, but it does calm and relax him and takes the fear away. 

Right, so that was a big 'light bulb' moment. I shall know now the next time Chris panics when he can't catch his breath to give him Oromorph. The GP said the dose could be upped as times goes on too. It may be the only thing that can help him, but at least it works.

No. 242.'Beds and mattresses.'

Well the original hospital bed delivered was deemed too short by the caring supervisor and after numerous phone calls from her a longer bed was delivered the following day, which is perfect for Chris now. Hats off to her for getting the job done,

I swapped the recliner for the larger of our two sofas and I managed to sleep better. Because the hospital bed will raise up and down we can match it to the sofa height and I push it next to the bed when I go to sleep. It means Chris can still hold my hand, which is more security for him than anything as he shakes it to wake me up if he needs anything. I think my clambering onto the sofa and out again has proved a source of entainment for him at least. 

When Chris sleeps during the day now he tilts the chair back to support his neck and puts his legs on his bed and then into his pressure boots, his heels were getting worryingly sore just resting on the wheelchair foot rests. I have been a little worried about his bottom, so we added a Memeaflex pad that he had for his manual wheelchair. Many people experienced with MND have said to me he should have an air mattress and the carers felts so too as he is spending so many more hours in bed now.

The district nurses, by their own admission, are not very good at getting back to you when messages are left. I did phone them yesterday about Chris having an air mattress, but heard nothing. Now bearing in mind that they have popped in a few times to see Chris for a couple of minutes each time. Only once about 3 weeks ago did any of them check his pressure areas. They seem to trust me to tell them all is OK. The physio phoned while the carers were here to ask how the new hoist sling was, I said that it hadn't arrived yet, but the carers had managed to borrowed one till it arrives. The carer spoke to her and then went on to say that Chris needed an air bed too. They have said they can see a difference in Chris in just the week that they have been visiting him. A while later the physio phoned to say that the district nurses said Chris didn't need an air bed yet, but they would order one anyway, it will be here next week. Now that annoyed me somewhat as they hardly see him and aren't really in a position to say whether or not he needs one now. The way his MND has progressed this past month, it is hard for me to keep up let alone those who see him very briefly. The carers were a little peeved too and to be fair I trust their judgment as they care for Chris for a couple of hours a day and see hands on what his needs are. The new mattress is on order so I guess that is the main thing. I am not sure the district nurses realise how quickly this disease can change. I know they probably have little experience of MND too, but that is beside the point.

Chris seems to sleep most of the day now, though he does perk up a bit if people visit. The morning seems to be taken up with the carers as they don't come till around 10.30am, he is worn out after that. He never was a chatty man and certainly not about his feelings. Whenever I ask him how he is he just says OK, even though of course he isn't. I guess he isn't going to change the man he is just because he has this horrible disease. I can see how fed up he is though. The tears fall more frequently for me these days, not for myself, but for Chris. It is the cruelest thing what this disease is doing to him, cruel beyond belief. I feel sometimes he is losing the will and fight to live and who could blame him?

He needed the fan on him to help him breathe last night. Everyday he seems a little bit worse. He is just exhausted by it all. Everything, especially being hoisted around and especially by me when I have to do it on my own, tires him. I never considered Chris to be a big man, but even his legs seem really heavy when I have to lift them, because they are a dead weight now.

Oh and the new hoist sling? That never turned up.

I can't let myself think too far ahead because the future is a scary place.

No. 241. 'The ICB money, not a bottomless pit.'

The Ice Bucket Challenge of 2014 was a phenomenon for sure, over $220 million dollars was raised world wide. To those who felt it was a waste of time, believe me it wasn't. That money is funding vital research into a cure, research that was unaffordable till last year. It gave those with MND hope, something tangible to hold onto.

I guess it was a little optimistic to think that it would take off again as it did last year and I know many did it without having a clue as to why, but for one month in 2014, MND/ALS was heard of, was understood, millions of pounds was raised, £7 million here in the UK alone.

In the U.S they have vowed to do the IBC every August until there is a cure, but with out something else as extraordinary as what happened last year, I fear the ICB will be going for many, many years yet and there will be many more people still losing their lives to this most vile and cruel of diseases. 

Last years IBC was a viral phenomenum, but like many viruses, they mutate and lose there potency. I wish many more would do the challenge this year and I think the bad weather we have had hasn't helped, but it would have given us hope again to see it take off like it did.

There is not a bottomless pot to fund research and that IBC money will run out.

Meanwhile I watch my husband die a little more everyday, he can no longer eat, drink, walk and can barely talk, but the scariest of all is his chest muscles are failing and watching him gasp for breath, well that is too much to bare at times.

It you would like to donate anyway, please text ICED55 then the amount, eg £5 to 70070. 

Thanks for reading.

No, 240. 'The hospital bed.'

Well, after the carers phoning to chase up the hospital bed and being told there wasn't one on order and then the doctor coming out to see Chris and also chasing it up, at 5pm a bed turns up. Coincidence? I have no idea, but at least it is here. It fits nicely in the space we made for it in the lounge.

I was a little worried it would be too short with Chris having to sit up and having wear his memory foam boots, but it seemed he just fitted. However at 2am he woke me to say his feet were really hot and uncomfortable. It seems he had slipped down a fraction and his feet were pushing against the board.

So...I fetched my tool basket and unscrewed the two boards. Thankfully they were only held on with four screws. The boots were then able to hang over the edge of the mattress by a couple of inches and this made all the difference to him. He was very comfortable otherwise.

I slept in the recliner chair. I had some memory foam pads which made the seat more comfortable. It wasn't too bad, being short is an advantage sometimes. Because the bed could be lowered it also meant I could lay my head right next to Chris and hold hands, so that is great.

Chris's day consists of mostly sleeping now in between the odd mucous episode and a toilet break. The GP said to up the Oromorph to 5mls to help relax him a bit as he gets scared sometimes with his breathing. He perks up a bit during the evening and manages to watch a couple of his favourite programmes on Sky+.

I thought he would be more upset about being in a hospital bed, but he is fine about it. He isn't so far away from me when I am up and about which is good too. He still gets in his wheelchair during the day.

I contacted Jon from Derriford and asked them if they could collect the NIV unit so that someone else could have it and he said they can arrange a courier. That is a relief. Chris is meant to go up there in September, but Jon agreed that there was no need now as the palliative care team are making sure he is comfortable with medication etc. He will hold onto the cough assist and suction unit.

Oh well, life with MND moves on a little bit more.

No. 239. 'Another poem.'

(This does not mean the end is near by any means, these are just the fears that hit me when I wake and are in my dreams.)

You sleep a sleep of laboured breath,

As I lay and weep and fear your death.

I want and want for you to stay,

To love me still for many a day. 

Yet I am torn to watch you slowly die,

You are too tired to weep, too tired to cry.

It is too cruel, to watch my boy,

Be sapped of life, be sapped of joy.

Stay by my side, I hear me say,

Yet be at peace I hear me pray.

Yet you hold my hand and smile your smile,

And I hold it tight and stay while.

So I wish and wish for you to be,

Well again and stay with me.

Where we can walk along dappled lanes,

And laugh and dance and love again.

Yet it cannot be, life has dealt it's cards,

When that day it comes, it will be so hard.

So remember my boy, I will love you for ever.

I will cherish the time we have left together.

Be the time be long or the time be short,

Be sure it is a battle you have bravely faught.

No. 238. 'So helpless, so scared.'

My blogs these days seem to be filled with bad stuff, but unfortunately this is our reality.

The farm sale went well in spite of the pouring rain and will go a long way to settle farm loans etc before the partnership is fully dissolved. There was much praise about how well the machinery was maintained and that is down in no small part, to Christopher, who looked after the machinery meticulously, as well as the cattle. His beloved Nuffield tractor has gone to a good home, where the new owner will cherish it and take it to shows and rally's. It has served the farm well for over 40 years.

These past few weeks Chris's MND seems to have progressed at breakneck speed. Although he still has some use in his hands everything else seem to be failing fast. The most scariest of all are the chest muscles.

My boy is struggling to breathe more and more each day, plus yesterday he seemed unable to support his neck properly. During the day tilting his wheelchair back a bit helps, but at night it is trickier as he needs to sit up right. The carers last night did their best to arrange the pillows to support his head, but it still dropped forward during the night. The fear in his face when on top of all of this he starts to gag on mucous is heartbreaking to see and as much as I adore and love my darling boy, part of me wishes this could end for him. 

I feel so helpless, so scared, so drained, so heartbroken, so angry at this vile, cruel, evil disease.

We must find a cure one day we must.