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.