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.