No.100. Five months later.

I can't believe this is my 100th blog and I've had over 16,000 views so far. It was something that I started, just to record what was happening to Chris. As weird as it sounds I didn't want to forget a single thing of what was going to happen to him and it is very cathartic for me to write my thoughts down.

It's been 5 months to the day since Chris was diagnosed, 5 months since our world was turned upside down, 5 months since our hearts were broken...... That's all.... 5 months.

Chris was diagnosed on May 5th 2014, my late dad's birthday. We thought that Chris being called in at short notice, for an appointment at 8am on a bank holiday, didn't necessarily bode well.

I started writing these blogs in June. I can't get over how much this bloody awful disease has changed all of our lives. It is horrific, all consuming and relentless. I might have had my suspicions of what might be wrong with Chris before his diagnosis, but I had no idea how our lives would change and how quickly too. Chris first went to the GP in February, so his diagnosis within 3 months was very fast. We didn't really have time to get our head around things, because as soon as we came to terms with Chris's health problems, they progressed a bit more and then we would have to get used to that.

We had no idea there would be so many people involved in the palliative care team that is assigned to look after him either and 'palliative', that term alone is scary, because that reiterates that this is a terminal disease with no treatment or cure. There seems to be constant appointments, some at home, some at hospitals, the physio, dietician and speech therapist, the neurologist, the respiratory doctor, the MND nurse, the palliative care nurse, the PEG nurse, the district nurse, the PEG pump nurse, the Gastro Doctor, the MND visitor and of course Chris's GP.

We know this support is good and Chris is grateful for it, but sometimes it seems that all life consists of is appointments. We have to live our life checking the calendar, just incase someone is coming or we have to go somewhere. At first people told us to have a holiday, to enjoy ourselves a bit, but once MND comes into your life, it is very hard to get away from it. The fact that it is progressive also means that we have no way of knowing what Chris will be like a few months ahead. We have no idea whether his MND is fast progressing or slow, but I would imagine it's somewhere in the middle. They say the average life expectancy for someone with MND is 2-5 years.

In January Chris had a bit of a limp and his hands were playing him up, but otherwise he was farming as normal, well sort of. He did have a couple of falls and I started to worry about him when he was out. I was still nagging him about the hours he worked, I was still trying to paint for a living, albeit not very successfully, but it was something to do in the evening while Chris was working. Now we spend a lot of time together, which was what I always wanted, but not this way. I was always trying to get Chris to think about retiring one day and I think he was coming round to the idea, but now him reaching retirement age is probably not going to happen, not the way his MND is progressing. I'd give anything for things to be the way they were again, Chris working all hours, me nagging him to rest, at least that would mean that he didn't have MND.

The thing I have learnt though, is that Chris is happiest here on the farm. If he can get out for a couple of hours a day on his scooter, then he is happy. Going away made him miserable because he couldn't drive and I had to push him everywhere in the wheelchair, he lost his independence. I think we'll opt for the odd day out or a weekend up to see Chloe, (on the coach next time though) rather than plan a holiday again. I can't bare to see him sad.

So now this is it, this is our life. I'm not sure I will ever come to terms with the fact that Chris has this awful disease and that it will take him from me. All we have really is hope, hope that it won't take him too soon, hope that he'll make it to Chloe' graduation in two years, hope that everything he will need for his care he will get, hope that his suffering won't be too great and hope most of all that a cure will be found one day and that no one will ever have to suffer this awful disease ever again.

MND, we did not invite you into our lives, be prepared to be hated and be prepared to fight as you aren't taking Chris without one!

No.99. Another day with MND

I forgot to say that Chris's PIP application has been accepted, so that is one less thing to worry about. I shall get on and claim Carer's allowance now.

Chris knows a DJ on BBC Radio Cornwall called Duncan Warren. They got to know each other when Duncan was a DJ at The Barn Club in Penzance many years ago. He is going to compare the fashion show that is being held by two of Chris's cousins to raise money for MND and he would like to interview Chris on the radio. It will be great publicity for the show, plus raise loads of MND awareness too. I might see if I can get someone from the local branch of the MND to support him during the interview as he is worried his voice will run out of steam.

Chris seems to have lost his appetite lately. He went out for a couple of hours yesterday afternoon and came in for tea feeling quite hungry, but he struggled to eat it. I think the effort of eating is just too much sometimes. Just as the PEG being fitted came at the right time, then so will the the pump and night feeds, which will arrive on Wednesday. I'm a bit scared of using the pump correctly and Chris is a bit wary of sleeping with it working, but I guess, like the PEG, it will soon become part of his normal daily life.

I hate how MND infiltrates and consumes everything.

No 98. MND changes all our lives.

We arrived home late last night after saying goodbye to Chloe in the morning, visiting my friend Debbie in Eastbourne and then leaving her house at 2pm. We arrived home just before 11pm. 

This journey consisted of the Sat Nav crashing as soon as we left the car park in Brighton, sending me into a panic as I had no idea where we were going. I passed an unloading place just past the Old Steine so pulled in and reset the darn thing, then we passed a body on the side of the road covered in a blanket with the police all around, that was a bit shocking and we felt sad for whoever it was. I then partly drove the wrong way up a road after geting confused about a contra flow change in Brighton. In Eastbourne I had to drive around twice to find Debbie's house. Setting up the Sat Nav to come home, I didn't check the route, only to find once we had started that  it had directed us to the A303, which involved going via the M23, M25 and M3 which were moving at a snails pace all the way. I think it took nearly 4 hours to get onto the A303!!!, so all in all, not the best first attempt at driving all the way home on my part. I just about managed to get us here in one piece. At least it took our minds off missing Chloe for a bit.

What does all this have to do with MND? Well I have driven since I was 18, but I have always been a reluctant driver. I'm fine with familiar territory, but I hate going somewhere new. Chris on the other hand loved driving, so it was always his job to take us somewhere new or do long distance. He was always so calm and never has he suffered from 'road rage'. So now, because of MND, the roles are reversed and neither of us like it. MND has changed all of our lives.

Chris was so tired when we got home yesterday and he seemed so sad too. He is hating what this disease is doing to him. When he is really tired the pitch of his voice changes too and it is more husky. It breaks my heart to see Chris desperately trying to do things as normal, but finding it so hard and tiring. Most people don't see all of this, he does his best not to give in in front of others, but we, his family, know different.

Yes MND changes all our lives, but nothing compares to how it has changed my darling husband's life.

No.97. Turn the clock back please.

This time last year we had brought Chloe up to start her first year at BIMM, Chris carried all her belongings up four flights of steep stairs, this year he had to sit in the car and wait while Chloe, I and one of her friends who came to help, did it. What a difference a year makes. I'm kind of scared to wonder how Chris will be for the start of Chloe's third year next September. I can't believe he only started getting the first obvious symptoms in January. How life has changed for all of us. I just want it back the way it was. I want Chris well again.

I have to learn to be not so protective too. My urge to care for Chris can sometimes over ride his need to be independent and he is too nice to tell me otherwise sometimes. I was the same with the kids, it's hard sometimes to not be that way. On the other hand Chris tends to bury his head in the sand about his MND, so we both need to find a happy medium.

I can't say I enjoyed pushing Chris around Brighton today, so many hills, so many paths not quite geared up for wheelchairs, lifts not working in a couple of places, it certainly opens yours eyes up to the problems wheelchair users can have when you have to use one.

Of course I felt I absolutely deserved an amazing Ferrero Rocher ice cream sundae along with Chris and Chloe after all that. Not quite diet fare, but it was gorgeous. It was in a fantastic new Italian ice cream parlour that has opened up in Brighton. We did so much walking and as I write Chris and Chloe are both dozing on the bed. We are all a little 'cream crackered'!

Tam phoned as two people had phoned her about Chris. One was someone wanting to know if they could deliver the PEG pump and feed next Tuesday and another from a nurse,Tam said, who didn't normally come down to our end of Cornwall, but was coming down and would like to see Chris. I can only think it is the regular PEG nurse. Tam is going to phone them back and confirm. 

We can't get away from things even when we are away. Next week is filled with a Dr's appointment, PEG nurse appointment and a trip to Treliske for Chris to have a respiratory check up plus the pump stuff will be delivered. I think the nurse who did the the pump training is phoning to come back and go over things again. It's great of course to have all this support, but sometimes we think, 'Just give us a break please.' This bloody disease is all consuming. TURN THE CLOCK BACK PLEASE !! And make this all go away.

No 96. Brighton

It was was good to arrive in Brighton after 8hrs on the road. I drove from Oakhampton (Chloe had driven till then) and only had one break, so was quite proud of myself even if I did find it quite stressful. The traffic was heavy at times, but luckily we had no mishaps. 

On the way up we had a phone call from the Travel Lodge to say that the disabled rooms had been taken out of service due to maintenance issues and would we like to stay in one further away, I said no, that we had to stay there so we ended up in a normal room after all. The staff were very apologetic, but I was rather annoyed as I booked early so that Chris could use the shower properly in a disabled room. He can't stand up in the shower any more. It is only two nights though, so I think he will survive. Goodness knows what the problem is. 

Chloe had a meal with us and then we walked back to her bedsit with her. I do love Brighton, it is so vibrant and alive. Chloe's new room mate in the next room on her floor is also going to BIMM and he seems a really nice lad. I think they will get on really well. He has wonderful green hair !!

We picked Chris up some whisky and went back to our room. We will spend the day with Chloe tomorrow, she is so thrilled to be up here again.

I checked in with home and Tam said someone phoned and said Chris's independence allowance had been approved, so hopefully that means his PIP and if so that is brilliant. The MNDA are also finding out from Cornwall as to why they won't fund the neuro chairs, so overall, it has been a pretty positive day.

No.95. Give us a break.

Today seemed quite manic for some reason. The physio came to do the routine check ups on Chris. She told us that Cornwall wheelchair services would not supply the MND recommended Epioc wheelchairs, which was something we didn`t want to hear, plus he would need to be completely off his feet before they would assess him for one, which would then involve weeks of him waiting for a less suitable wheelchair to be be delivered. How is it right that people are left with absolutely no independence like that? It is so wrong.

Chris also had another PIP letter saying he has to have an assessment on the 20th now. I was told to phone again so they could postpone it again. What a way to run a system. I emailed Chris`s MND nurse and she said to contact the MNDA as they were now employing someone specifically to deal with these problems. The person I spoke to took down Chris`s details and she said the usual wait for PIP was around 6 months and if he hadn`t heard by then they would write on his behalf. She also recommended writing to our MP too, which I did.

We then had phone calls from the palliative care nurse wanting to make an appointment and the dietician telephoned to do a phone consultation with Chris and to arrange delivery of the feed pump and feed.

The local MND visitor then phoned to make an appointment too. We then had family phone calls and the odd cold call thrown in, I felt like I had been on the phone all day.

Chris had to make a couple of business calls, which he was concerned about because he is very self conscious of his speech and I think that makes him worse.

On a good note Chris`s cousin came to visit with details and tickets for the fund raising fashion show she is arranging for the MNDA. She has worked hard, we hope it goes well.

As much as we hate taking Chloe back to Brighton, I think we`ll both be glad to get away from home again for a couple of days.

We really can`t get away from this disease, no matter how much we try. Give us a bloody break MND.

No. 94. Life goes on with MND.

Busy day today, Chris has a physio visit, the dietician will be phoning, plus I have to make sure all of Chloe's stuff, plus a wheelchair will fit in the car. We are taking her back to Brighton tomorrow as she starts her second year at BIMM doing her music degree next week. 

Not looking forward to that in many ways, we will miss Chloe like crazy, but we are excited for her too as she should be recording her first EP in November and is excited to be going back. Thank the Lord for Messenger and Skype. It will be the first time I will have to drive the whole way home, a 7-8 hour drive depending on the stops. Chloe will share the drive up. I know Chris really misses driving, but his weak feet and legs make it too dangerous for him to drive now.

I managed to book a disabled access room in the Travel Lodge so there will be room for the wheelchair and Chris will be able to shower. We do love Brighton once we get there. We are going to visit a friend of mine too on the way home which we are looking forward to.

MND affects every part of your life, there is nothing we can do now with out having to consider it and it's consequences. It won't stop us living life though, we just have to plan things differently, like I've said before, can't let MND have all it's own way.