No.74. The simple things.

TIME OUT. It did us good to get out and away from the farm yesterday to somewhere other than a hospital appointment. It wasn't anywhere fancy, I just took Chris and Chloe to see the places I loved as a child when I lived in Hayle. I knew it would be level, so wheelchair friendly. We walked a few miles, but it was worth it. Chris loved it and it brought back memories for me. I still feel mentally drained, but even though pushing Chris in a wheelchair should have been a constant reminder of his MND, the walk was actually a really good distraction. It has been so hard not to think of the future lately.

Sometimes the simple things are the best. 

BACK TO REALITY. Chris has a week of appointments, the dietician on Tuesday, the speech therapist on Wednesday, plus yet another INR blood test for his PEG op on Friday, though I will find out I think whether or not he needs another one, or if last weeks test will suffice. Certainly plenty of reminders of MND this week so yesterday's distraction was really needed. MND really does try and rule our lives.

No.73. Back to memory making.

I felt more like my normal self yesterday. Kind and more importantly, understanding words from friends and my MND family helped a lot. So thank you for that. I slept better too.

Chris's problems with his swallow and the gradual deterioration of his speech still plays on my mind. It's beginning to dawn on him that this is happening quicker than he would have wanted. We joke that we need to make a signal that means I love you. I suggested hand signals, but Chris couldn't make his fingers do what he wanted so we laughed at that. I know there will be fancy technology available, but we wanted to think of something more personal. I guess that is a work in progress.

Chloe goes back to BIMM in Brighton in October, to continue with her degree for 3 months. The way things have progressed I wonder how Chris will be when she comes home in December. I hope he will still be able to talk, you never know with this awful disease. I've told him that he needs to say all the things he needs to say now while he can, all the important and personal stuff. I think he is beginning to get that.

We are off on holiday on the 20th, just Somerset, it's the first proper holiday we've had in 10 years, the farm always got in the way before. I've been busy researching all the places we want to go to and checking that they are wheelchair friendly. We quite fancied Wookey Hole, but I think it was a bit much for us to expect that going down into caves would be wheelchair friendly, so I think we'll give that a miss. The bungalow is wheelchair friendly and the whole family is going except Tam and Karl, they have work and pet duty. It will be nice to get away and have some fun before Chloe goes back. Jordan will have his birthday while we are there, my eldest will be 27, so we will have a reason to celebrate. 

Well, the sun is shining, we are off off out this afternoon together, just Chris, Chloe and I, time to stop dwelling and back to making some good memories, one thing MND can't stop happening.

No.72. Woe is me.

I really didn't want to write this blog today, I couldn`t shake a low mood and tiredness all day yesterday. I guess this disease affects us loved ones of those who have MND too, but in different ways. Most of the time I can detached myself from it. I talk about it, I write about it, but it's like I am talking about a stranger, not my darling husband. I vowed if I am going to write this blog though, as a personal journey, then I have to chart it all, even when I would rather not share it.

Even now I keep hoping I will wake up and find out that someone is playing a really bad joke on us, but of course I know that it`s all so very real. People who know Chris ask me how he is, I don't know what to say half the time, my reaction is to say OK, but of course he isn't, the anger inside me wants to shout 'He's got bloody MND and he's slowly dying, how do you think he is?', but I would never do that, people are only trying to be kind and of course I don't really mind people asking. This disease is slowly taking my husband from me, bit by bit, and I hate it!! I hate this disease and I hate what it is doing to him. At this moment I am neither feeling brave nor positive, I just feel angry and scared.

Back to reality, the nurse came to see Chris around 10am yesterday. We were a little confused because our GP had said she was a MacMillan nurse, but she said she was part of the NHS palliative care team, maybe she was, maybe this was something similar. Either way she was a lovely lady and someone else who will be there as the need arises. This was the first time I had seen Chris get a little emotional with someone other than me, family, or the consultant, especially when he talked about what he can no longer do outside. I could tell she wanted to talk about 'future' stuff, hinting at the problems that may arise like bedsores, suggesting medication that might help with the choking, like muscle relaxants, but she said they would make him really sleepy. I don't think he wants that yet. The awful thing with this disease is that nothing can really halt it or make it better, you just know that it is going to keep getting worse, keeping up it's relentless onslaught on my dear husband's body.

We did have some smiles yesterday too though. In the morning our farrier had posted a brilliant Ice bucket Challenge video on Facebook and Chris and I had a good laugh at that and were really touched by the sentiments and in the afternoon the MNDA posted that their total funds, including the Ice Bucket Challenge funds, had reached £4,500,000, quite incredible, but somehow even that couldn't really lift my mood. I hope today will be a better day. I'm going to take myself for a walk around the farm I think, if the weather stays nice, exercise and fresh air will hopefully do the trick.

No.71. Back to the 'new normal'.

Yesterday was a better day. We both had a good nights sleep, I sometimes think that emotion can be more tiring than physical work.

Chris had a small choking attack while doing nothing yesterday morning, he wasn't drinking or eating. That freaked him a little. I had to go out to my WW's class. I was gone a couple of hours, when I came back he was still eating his breakfast. He said he was scared he would choke while I was out so was eating really slowly, that's not good.

On a good note though, a new appointment arrived for Chris's PEG op. Friday the 5th, only a week away, it can't come soon enough. A Macmillan nurse is coming to introduce herself to Chris later, it seems a bit soon, but it will be nice to say hello I suppose. I'm not really ready to think about when Chris might actually need one, that's a bit scary. 

It was really heartening to think of all the awareness that has been raised, but there is obviously still some confusion over the names ALS and MND. I was speaking to a lady yesterday and she said her daughter was going to do the Ice Bucket Challenge for ALS. She told her daughter that she thought ALS was MND, her daughter said that it wasn't, it was a new disease. Of course I put her straight and also gave her the text donation link. It just shows that the message hasn't gotten everywhere. It makes you wonder where she would have told people to donate.

I was also listening to a brilliant interview on the BBC World service with people who have MND. One man said that people in rural areas don't get such good service because they don't live near specialist centres. I have to disagree with that. Chris was contacted within a few days of diagnosis by his MND nurse and support team and it has been on going ever since! In fact sometimes we want to say, 'Enough already', but of course we don't, but here in the UK, you don't have to live in the big cities to get the best care.

Last evening the Ice Bucket funds topped £3,000,000!!! Chris and I sat with my i pad while he was eating his dish of purée and I just kept pressing the refresh button. We yelled out when it reached that number. It was awesome. 

On the puréed front, I just purée what Chris usually has and the meals actually taste really nice. The girls suggested I could sell them, like milk shakes, but call them meal shakes instead, not too sure it would catch on. We had a laugh about it. I melted dark chocolate and topped it with Bailey's for Chris's pudding. I think he rather enjoyed that.

What a difference a day makes. The fight and the laughter are back thank goodness. I spoke to a lady I had never met before on Face Book yesterday, her husband has recently been diagnosed too. She said that MND is the last thing on her mind before she goes to sleep and the first when she wakes up. It's the same for us, but this whole thing would have been a great deal harder if I hadn't come across the wonderful MND 'family' that is out there. They've been there for the likes of us, started the Ice Bucket Challenge and are all just pretty inspirational and when I wake up to see videos that have been done by family and friends, well it warms the cockles of my heart. Thanks everyone. This disease used to thrive on the lonelyness it also brought along with the symptoms, but in this modern world of technology, that lonelyness is gone, that's one battle we have won MND.

No.70. Down, but not out!

Well yesterday started off well after discovering the Ice Bucket Challenge funds have risen to over £2,000,000!!! I was speechless to be honest. This morning it was over £2,600,000. It's just amazing.

We took ourselves off to Treliske, an hours trip, tackled wheelchairs and lifts and eventually found the endoscopy department, tackled the doors to the reception with help, only to be told that they had forgotten to book the anaesthetist!!! I couldn't believe it. It was obvious the nurse was angry, but that wasn't much consolation for Chris, especially as he had two choking episodes yesterday and we had both psyched ourselves up for it. They said they would reschedule it quickly, I hope so. I contacted Chris's MND nurse and she is going to help chase things up. We were not happy. A precious morning was wasted, although we did get to visit some of Chris's family who live near to Truro, which is always nice. He was starving by then too, so his sister obliged with some much needed grub for him when we got there. He had the first choking attack of the day there too. It is always scary, but I got a bit emotional, I think I'd been on the brink since leaving the hospital. At least when we arrived home the correct size wheel chair had arrived, it looks more like a normal wheelchair now, rather than a bariatric one!

I felt really emotionally drained later, especially after Chris had his second choking attack. I hadn't puréed his evening meal quite enough. I know now it needs to be like thick soup. He was very tired too. He hasn't said much, but I know he wanted this PEG done yesterday. He tried to keep smiling, but it had drained him too. I was just about holding it together and then I read that Tesco were donating a percentage of their income from their ice sales to MND. Now I wouldn't normally get tearful over anything Tesco does, but I broke down. All the money being raised, donations, family members doing Ice Bucket Challenges etc and then topped by yesterday's disappointment over Chris's PEG op, just tipped me over the edge. I also don't usually take too much notice of people who write negative stuff on the internet either, but yesterday, one idiot caught me at a bad moment and I gave the troll a good mouthful. One should never feed a troll, but it felt good at the time. A nice cuddle with my husband on the sofa with some alcohol made things a little better and today is another day.

Everything in life attracts the good and the bad, especially in human nature, but the bad fades into insignificance compared to the goodness that is out there, Family, old friends, new friends, they are what counts. The people who are there for you, who understand and even if they don't, they do their best to try.

Life sucks sometimes, like operations getting cocked up or with bigger things, like your loved one getting MND. Somethings can be rectified, some can't. People say we are brave, everyone with MND is brave, there are only two options, to give up, become full of self pity, or show this disease that it has a bloody fight on it's hands and I am going to be there fighting it with my husband all of the way. We may be down, but we are certainly not out.

No.69. Mixed emotions

Yesterday was full of mixed emotions , the elation of the IBC funds hitting £1,000,000 around breakfast time and then them reaching £1,650,000 + by the time I went to bed. I was thinking £2,000,000 was a real possibility by the time I woke up today and it was £2,000,000 and more, absolutely, bloody fantastic.

I also spent yesterday getting anxious about Chris having his PEG fitted today, yet another reality check in this disease's progress. I think Chris will be glad to have it done. It will take some of the fear away from eating for him. The tube will be inserted via an endoscopy tube I think and then come out through his abdomen. That will mean he will be able to take liquid feeds that way once he can no longer swallow properly, which may be sooner than we had hoped. I think they will tell us more later about how to use it. We have to be at Treliske for 10am so we will have to leave around 8.30am. 

I wonder what the IBC fund will be by the time I get home ? Chris will have to stay the night and I will pick him up tomorrow.

Having to face the reality of this disease in the here and now really does suck, imagine never being able to eat or drink orally ever again? That is the reality for most MND patients sooner or later. I heard tell of someone who would have Red Bull put down his PEG tube because it made him burp and he could then taste the bubbles. MND is so cruel. I pray to God that one day there really will be a cure for this awful disease.

BUT £2,000,000 THOUGH . A-FLIPPING -MAZING and two million thanks back :')

No.68. The hero and the wife.

(Just woken and the funds are £961,332.51. That's flipping amazing !!!!!)

Chris was still low yesterday morning, he said he felt nauseous too, but he made himself eat breakfast. It was pouring down with rain and I know he wanted to go out and do some work, but I suggested we go to PC World to have a look at laptops. It would get us both out of the house for a couple of hours. They didn`t have much there really, but it gave us an idea of what was available. On the way home the sun came out for a while and after Chris had rested he was itching to get back out on the farm.

Chris has to have a blood test today before his PEG surgery tomorrow to check how his blood clots I think. I was interested to read one of the MND scientists say they were researching when is the best time to fit a PEG and in which way. Just talk to the gastro surgeons, speech therapists and dieticians. Chris went this early because he was advised to by them. The gastro surgeon told us he wished everyone came this early. Surely it can't take too much to survey the professionals that deal with this on a regular basis.

When we got back I found out that the IBC fund had reached £700,000, that was unbelievable. Then our farrier left a post on my Face Book page to congratulate me on our picture being on the MNDA home page. I had no idea what he was talking about, so I had a look, there at the top were three scrolling pictures, Benedict Cumberbatch, Jose Mourinho and ours !! I haven`t the foggiest why they picked ours, but honoured all the same. There are others who are more deserving and have been raising funds and awareness for years, maybe our photo just fitted. Life is full of surprises and not all of them bad.

I think it is quite possible that the IBC fund could reach a million. That will mean so much more research and also training young people to be scientists to continue this work. Maybe there will be some money in the advertising budget to do a TV ad for the `Bake it` days next June. We could call it "The worlds biggest `Bake it` morning " and yes, if you get that, it was intended. Seriously though I  guess research and support at ground level should really take priority.

I felt my own mood slipping again last night. I think I have thrown myself into trying to spread awareness and writing this blog as a way of dealing with all of this. I feel so helpless watching this disease gradually take hold of my husband. It really does break my heart to see this happening to him. I know I am not the only one going through this, but each of our pain is our own. It helps to know there are others who understand, but in the moment it can feel very lonely. I have no idea if Chris 's progression is fast or slow, we haven't asked, but he has gone from just a limp in February, to his speech, hands and swallow being affected. He can't walk very far, needs his food puréed, chokes easily, loses his balance when he stands up, can no longer drive the car and now finds writing hard. That doesn't seem slow to me, so much for Riluzole. Chris is really the strong one through all of this, he can't wait to get out and do some work outside, he tries his best to just get on with things and he also seems to accept these changes to his body without complaint. I know it frustrates him at times, because of the things he can no longer do, but he doesn't get angry, just a bit sad sometimes. Chris has true courage and he will always be the hero in my eyes.