Saying Goodbye

Last week was not an easy one for any of us but friends were a great support. Mark’s friend Tom took him walking in the Dales. They climbed Buckden Pike in hail, heavy rain and sunshine, something that Simon would have done in similar circumstances. Eve and Grace had encouraging ‘phone calls and text messages - two of Grace’s close friends changed their plans to be in Skipton with her.

Last Sunday we all went walking along the Strid at Bolton Abbey and had lunch outside at the Cavendish Pavilion. It was a great environment in which to make some of the decisions that had to be made and on the way back the children gathered pine cones so that we would have a large basket full for throwing in the grave. Squashy and with a distinctive earthy smell and textured surface the pine cones were just perfect.

In a pothole by the Strid

Physical activity definitely helped when we felt overwhelmed. Grace and I spent time in the garden, planting some new plants, mowing the lawn and venting our feelings on the weeds. Out there we could ignore the ‘phone which had been ringing incessantly.

Eve was bombarded by questions which continue. Her son Adam likes facts so wanted to know how deep was the hole going to be, who would dig it, could he get into it, why was the coffin screwed into the hearse, when would we be planting the tree.... In Mark’s family Seth was concerned because a woollen coffin surely wouldn’t be strong enough to hold a body.

On the day of Simon’s funeral I woke up just before 5am and felt very restless. As I drank my cup of tea I knew that the best thing for me to do would be to go down to church and sit with Simon – his coffin had arrived in church the previous evening. I listened to the dawn chorus, stroked the woollen coffin, cried a lot and watched the church get gradually lighter. It was a very special time and I left feeling calm and ready to face the day.

We met friends and family as they arrived for the funeral service and there were some lovely surprises – my friends from Pilling when I was a teenager, my university friends, our friends from when our children were growing up in the village, a friend from Freetown days, Simon’s work colleagues who had travelled miles and reorganised busy diaries to be with us.

The whole day was wonderfully appropriate, deeply sad yet joyful. The beautiful woollen coffin with the simple spray of flowers from Eve’s garden, the African fabrics hanging over the ugly wooden chipboard panels [the inside of the church is a building site at the moment], the great singing, all my children’s contributions and Louise’s address, the pine cones being thrown into the grave, the delicious lunch provided by Rob and Jo, all helped to make the day really meaningful and special.

Many people say that the waiting time before a funeral takes place is the worst but for me it was the day after. I am so pleased that on Friday morning I was able to show Simon’s aunt and cousin around the ceramics exhibition before they had to get their train home and that in the afternoon I was back in church with the ‘Smiley Faces’ group. The young mums and their children are always a pleasure to be with. Yesterday I dozed all afternoon on the sofa so there is obviously a lot of sleep I need to catch up on.

If you would like to read the reflections Eve put together and read at Simon’s funeral please get in touch by sending me an email liz@croodhouse.freeserve.co.uk

New Beginnings

In his last blog Simon spoke about the lovely week we’d had and if he’d been able to do an entry last weekend I’m sure that he would have said something similar. Sadly the blog he wrote on 31 March was his last as Simon died unexpectedly and peacefully in his sleep on Good Friday. He was curled up like a hamster. I can’t explain my feelings at the time but within a few hours I was feeling very positive. My lovely husband and best friend’s spirit was free from a body that was slowly consuming him. He’d not had to resort to using a wheelchair or having people caring for him apart from me and he’d died in the home he loved in his own bed.

It had been hard for him in recent weeks as he felt useless and very vulnerable. He was finding it so difficult to stay positive but on the day before he died we had been across to Harrogate to see our daughter and the two boys and he was happier than he’d been for a while. Eve, the boys and I went to Harrogate theatre and all enjoyed ‘Tiddler and other Tales’ while Simon stayed at home reading a book in the conservatory overlooking the back garden. When we got back he was telling us about all the birds he’d seen as we ate lunch together, and Eve got told off for throwing a piece of unwanted toast into the bin instead of feeding it to the birds.

Our Christian faith and its values have underpinned the thirty seven years Simon and I have spent together and hopefully permeated our personal relationships and working lives. If Simon had to die now what an auspicious day to die - following the Easter story certainly helped last weekend. His funeral will take place at our village church, St. Mary’s Embsay, at 11.30am next Thursday, April 19^th, followed by a green burial at a beautiful site not far away from where we live in Eastby. I’ve got him a Yorkshire wool coffin made locally which he would certainly approve of.

Grace, our youngest daughter, came home yesterday. It’s been hard for her being thousands of miles away in New York.

I intend to continue Simon’s blog for the time being as several of our friends and family have said that they would like contribute to it. I also think it may help others to know how family and friends come to terms with the loss of someone close to them.

The following poem was written by Penny, Simon’s cousin in Australia when she was coming to terms with her husband’s death. It will be read during Simon’s funeral.

A journey by train

Facing the way the train is going

Allows you to see the landscape flowing

Past the window and out of sight

Always replaced by the next scene’s sight.

Facing back the way we’ve been

Startles but there’s time to grasp the scene

And watch it fading down the line,

To let it go, the past’s grapevine.

Which seat do you choose as you journey along?

Is your focus ahead, much further on,

Or searching behind for what is past?

Perhaps now is where the best will last.

Eve, Simon and Daniel, Christmas Day 2009

Life

What a lovely week it has been, and we are lucky – it’s only March!  I have had the chance to sit outside on the bench for the first time and have my coffee and lunch there soaking up the sun.  We even went for a drive through the Dales in the VW Eos, our convertible car, to Threshfield primary school to pick up some resources they had borrowed and drop off some fair trade footballs. It was the first time this year we’d had the top down and it was very nice being chauffeur driven. It’s a luxury but well worth it.

No films worth seeing this week just as we were getting used to the idea of going out which is important for me as I don’t go anywhere nowadays.  Interestingly, Mark my son asked how many people I saw in a day besides Liz.  The perceived wisdom on this matter, according to my pyhsio cousin Penny, is that there should be eight distinct contacts with people in a day, face to face, via skype, or phone.  I am nowhere on this scale hence my feelings - I have become an untouchable.  Why does this happen?  Can somebody help me to understand this?

Talking about physiotherapists, I met my new specialist at the Bolton Abbey gym along with my Hungarian trainer.  They went through my current training programme.  Generally it is in good shape but I have to refine some of the exercises and introduce a balance exercise, which is hard for me to do, but it was thumbs up, I’m doing well.  That is a good job as it feels like the only tool in the box at my disposal right now.  I have come to the conclusion that it is the continual daily degradation that is demoralising.  You can't walk properly; you can't talk properly, eat properly or go to the toilet properly, but keep smiling girls and boys!

P.S. An update on terminology from a doctor’s daughter;

·         DYSPHONIC: neurologically caused voice problem – hoarseness or difficulty in speaking

·         ANTEROCOLLIS: Head tilts forwards

·         BRADYKINESIA: describes a slowness in the execution of movement

·         MYOCLONUS: a brief, involuntary twitching of a muscle or a group of muscles

·         MINIPOLYMYOCLONUS: mycolonus is a brief, involuntary twitching of a muscle or a group of muscles, so presumably this means a small, brief involuntary twitching of many groups of muscles

·         EPHEDRINE: is a drug commonly used as a stimulant, appetite suppressant, concentration aid, decongestant, and to treat low blood pressure associated with anaesthesia.

·         MIDODRINE is a drug which raises reduced blood pressure

Spring

Doesn’t sunshine make a difference to our spirits? I feel quite at peace with the world today and that’s why this is going to be short. It’s lovely to see our plants growing again. Some of the plants in our garden are quite old. I planted them soon after we moved here 34 years ago this June. The grass is growing too and will need cutting soon. This was my job until last year but no more – another for Liz’s ever increasing list. For me it’s another brick in the wall as I increasingly become more deskilled. Apart from this I’ve not had a bad week. We went to see ‘The Artist’ in the small cinema in Skipton, the film tipped as the best film of 2012 after many Oscars and Baftas. Although we enjoyed it, it didn’t really live up to expectations. By contrast ‘The Exotic Marigold Hotel’ we saw the previous week was really entertaining and we would go and see it again. Maybe it’s a generation thing?

I’ve been to Harrogate twice this week. On the first occasion we had a trip to Harlowe Carr Gardens with Daniel who we were looking after for the morning. I’m pleased because Daniel is getting more relaxed with me and yesterday we played ‘Chicken Out’ together! When he couldn’t understand me he shouted ‘Repeat yourself’ – he’s not three until next month.

I’ve not experienced the NHS this week. However my Australian cousin, Penny, who you may remember wrote in my blog when she was staying with us in November last year, has been having a torrid time as this week she had a mastectomy after a routine test when she got back revealed a small tumour. I am sure that you will want to wish her with me all the very best. None of us know what’s behind the corner.

P.S. for Ben, my Australian nephew. Webber did better today but still no podium.

Is it Spring?

 

Hello everybody, I hope you are keeping well.  I am looking forward to my day as this morning the Formula One racing started in Melbourne, Australia.  I love the razzmatazz of the events and the technical expertise combined with human skill.  Watching motor racing has been part of me since about 16years old when I went to places like Silverstone and Mallory Park as a marshal.  My eldest brother Peter used to take me to the events.  He was mad keen on restoring cars so there was always one available to take us - I don't know how he put up with me.   My trainer at the gym is very keen supporter of Formula One too so on Monday when I go he will no doubt want conversation!

I have been busy recently due to external examining at Lancaster University.  I would recommend the CETAD team if you are thinking of getting a degree later in life.  They run an APEL system that is accreditation of prior learning and experience, as well as individually negotiated learning contracts.  It allows you to pick and choose which modules are best suited for your learning needs.  They are also a hard working and caring team who treat me well.

I went to my GP on Friday morning, the first time for nearly a year because I normally use Internet or telephone to talk to her.  She is not the most popular doctor in the surgery.  Perhaps because she is straight to the point, and has no time for time wasters but I like her.  She does have some knowledge of MSA which helps enormously, so we got down to business quickly.  She went through the letters from my London consultants and my local urology consultant and looked at my left foot which has been causing me problems – I get a dull ache in three of my toes all of the time and sometimes in my heel.  I have to see a podiatrist and have a swallowing test because the last one was a year ago. However, in the past I have had tests, for example, a blood test to check my kidneys are okay but two and a half months later I still haven’t had the results. I assume no news is good news. My medication remains much the same.  Liz went with me for the first time – my good shepherdess. We all agreed that I would probably be in a wheel chair by now if I didn’t go to the gym – the routine is paying dividends.

Things are getting more difficult to do, I can't walk very far, my bowel and bladder are erratic and I find it increasingly difficult to speak  so it is not surprising that sometimes I get emotional and feel down but spring is in the air. We haven’t got any lambs in the fields around our house yet but the daffodils are out on the side of the road and the birds are busy making nests. The longer days and sunshine we’ve been having recently lifts my spirits. Liz and I sat outside our favourite café in Skipton and drank hot chocolate and watched the world go by after my doctor’s appointment this week. How about you, what’s giving you a buzz?

Making MSA understandable

 I think I now have the beginnings of an MSA dictionary thanks to Simrit, a new qualified doctor and a good friend of Grace’s from St Andrews University days.  It is not complete yet as I have found some more. If you have a contribution to make, it can be funny too, just send them to my Facebook account.                   

It is interesting that all the terminology in last week's blog and explained here was found on one side of an A4 sheet of paper in a letter to my GP after a consultation in London with an honorary clinical assistant to Prof Andrew Lees.

This week’s exciting news is that I'm now the proud owner of a blue badge – as yet untested.

I have had a couple falls this week but my bowel has been causing me the most problems.  I also have not been my chirpy self, rather flat.  Having lunch with Ian yesterday broke up the tedium of the week as I was able to get out of the house - I feel more and more housebound.  Ian is such good company and  lunch with him was a real tonic.

Ian also gave me a detailed account of a neighbour who is suffering from bowel cancer and being treated at Airedale Hospital.  It was a similar story to mine and made me laugh.                                           

MSA TERMS ORTHOSTATIC  HYPOTENSION: Basically it’s the dizziness/head rush u can sometimes feel when u stand up. Literally it’s caused by the drop in blood pressure when u stand up. Orthostatic means standing up and hypotension is low blood pressure. PRE-SYNCOPAL EPISODES: syncope means fainting. Pre-syncope is the bit before u faint so kind of the same as above - dizziness or whatever other feelings u get before u faint. REM: rapid eye movement. I think. Don’t know what context it is in though. Its best described I guess when u are in the state of sleep and your eyes move rapidly...it’s in the name really. MYOCLONUS: myo means one muscle and clonus means twitch. It’s an involuntary twitch of a muscle or muscle group . ANTEROCOLLIS: l admit, I cheated and googled it....ha ha! It’s the characteristic head/neck bent forwards that you see in people with Parkinson's disease. DISARTHRIC: Disarthria is difficulty with pronouncing words - you have to be patient. A person with Disarthria is said to be disarthric. CONGENITAL STRABISMUS: Congenital means you are born with it and strabismus is an eye disorder where both eyes don’t line up the same way. DYSPHONIC: ANTEROCOLLIS: BRADYKINESIA: MINIPOLYMYOCLONUS: MYOCLONUS EPHEDRINE: MIDODRINE