Health Update

One or two folk have been asking how I’m doing physically as I reach the middle of my walk4andy.

Well, I’m pleased to report that all is well.  My feet in particular are completely blister-free thanks to great boots and a lot of prayer!

On Day Three my legs were very stiff and I worried that I wouldn’t be able to manage the walk but that morning I received a text from a friend praying for healing and after about half an hour the stiffness wore off and I’ve been fine since.

The diabetes is not such a good story.  It’s been a bit like the terrain here in the middle part of the Wall – very up and down!  Although my Freestyle Libre scanner means I can check blood sugar levels very easily, it means I tend to respond too quickly I think and so it starts to ping pong.  Interestingly the problems have been worse after the day’s walking rather than during.

But if you are the praying kind, I would very much value prayer for better control over the last few days as the massive fluctuations can be exhausting.

The friend who texted sent me this verse from Habakkuk:

‘God, the Lord, is my strength, he makes my feet like the feet of a deer, and makes me tread upon the heights.’

I’m not quite a gazelle leaping gracefully along the Wall, but I do know that I am finding healing here as I walk and not just physically.  Thank you again for all your prayers and support.

Dress Rehearsal

Dressed for the part now

With just over a week to go now, I had the chance today to get in a final practice walk of a decent length from Evington to Mountsorrel (about 12 miles I reckon including getting lost round the back streets of Rushey Mead, a detour into Birstall to find a loo and following the meandering of the Canal!)

The weather was fine and I left in good heart from St Denys with Geraldine, our Lay Reader.  There was a lot of pavement pounding to begin with but we found a route which exposed to me parts of the city I certainly hadn’t seen before!

 

Unfortunately, I had a hypo just before arriving at Watermead Country Park on the edge of the city.  Having done all the right things (halved my bolus with breakfast and put on a temporary basal), I’m not quite sure why that happened but I do know that the continuous sensor I will have on my arm for the real thing will help me to take preventative action sooner.

 

There were lots of beautiful moments but a couple of things from today’s walk really stand out for me:

  • First, the amazing provision of hospitality at the Catholic Church in Birstall.  We arrived desperate to find a loo and somewhere for Geraldine to treat her blisters.  Brenda at St Theresa’s welcomed us with open arms and gave us a cup of tea and some biscuits too (party rings – my favourites!)  She even had the right stuff to put on Geraldine’s blisters – literally a Godsend.

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  • The second was the fantastic welcome from the gang at Christ Church in Mountsorrel where I had planned to finish my walk during their Coffee/LunchDay4Andy.  I was deeply moved to see his church family rallying once again even after such a long time to show their support and love for him.  I was also very thankful for the delicious bacon sandwich and a proper mug of tea!  Thank you, lovely people!

 

So that’s it for the serious walking until I’m up on the Wall on the 25th.  But today has taught me once again about the wonders of God’s provision and I couldn’t help smiling as I found an extra spring in my step after passing this pub by the side of the canal … (and no, it wasn’t because I had popped in for a quick pint, this was 11am!)

‘We have this hope as an anchor for the soul firm and secure.’ (Hebrews 6.19)

Dad

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Dad with his two beautiful boys back in the late ’70s judging by those sideburns!

I’ve written a lot about Andy and because he died so young from VHL, I think his story is particularly moving.  But he wasn’t the only one in the family with VHL.  Although it is rare (1 in 36000), because it is genetic, when it hits one person in a family, it’s likely to affect others too.  And in our case, it was Dad.  In fact, Dad had it first.

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Dad and Andy

A successful building society manager, member of the Round Table, active in the community, and with two wonderful little boys (!), Dad collapsed in his late thirties when I was about 6 years old.  They found a tumour in his brain the size of an egg which later turned out to be one of many, a symptom of Von Hippel Lindau disease.

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Dad and Andy in more recent years

My memories of Dad before he was ill are few and far between.  Instead, etched in my memory are the fear I felt when I saw him having a fit at the top of the stairs, or another time I found him lying on the kitchen floor, or when he passed out over lunch in Swiss Cottage in Leicester.  I remember how uncomfortable I felt visiting him at Addenbrookes when I couldn’t understand what he was saying, and I remember the painstaking slow process of speech therapy, the endless repetition of ‘The man walked up the hill slowly’!

For many years, sadly, Dad was something of a stranger to me, not least when he went to live with his mum, my grandmother, in Wisbech and the occasional visits felt like going to see a very elderly relative.  We dressed smartly and were on our best behaviour while Dad sat in his chair smoking his pipe and we drank tea out of Gran’s flowery bone china cups and admired her doilies or talked to the budgie!

But life changes, and as we grew up, we got to know him better.  He married again and that gave him a new lease of life and energy.  Despite the constant appointments and operations that he too had to endure, he was a determined and positive person, always keen to talk to anyone who would listen!

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Dad with his wife Wendy and a rather tired and grumpy Hilary after her baptism in 2008

We grew much closer in later years, and although I couldn’t share in his experience of VHL (or his love of snooker or cars for that matter!), when I was diagnosed with Type 1 diabetes, there was something we could share.  We would bore everyone else by comparing blood sugar readings, changes in treatment and carb counting.  Dad was fascinated by the flexibility I had with my pump, while he would still insist that he couldn’t have any sweet desserts and complained when the menu didn’t offer cheese and biscuits!

In fact, Dad said it wasn’t the VHL that annoyed him, it was the diabetes that he found much harder to live with and caused him more angst on a day to day basis.  In fact, it wasn’t even the VHL that caused his death in August 2013 but a heart attack while recovering from his latest brain operation.

As a boy, it was common for people to say I was like my dad, while Andy was more like my mum.  Of course, the reality is we are much more of a mixture of our parents’ genes and uniquely ourselves too.  But I am proud to be told I am like my dad now, complete with the terrible jokes that make my daughters cringe.  My dad, Michael Smith, was a remarkable man, who taught me above all what it means for God to turn our weakness into His strength.

 

 

Food glorious food!

Andy loved his food.  Here he is back in his twenties enjoying a barbecue in the back garden:

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Andy liked all sorts of food and wasn’t afraid to try new things.  He loved hot spicy curries and chilli as well as steaks and bacon sarnies.  I don’t think he could ever have been a vegetarian!

I’m looking forward to walking from Evington to Mountsorrel next Saturday to enjoy a bacon sandwich and a piece of chocolate cake in his memory with his friends at Christ Church.

Image result for bacon sandwichWhat I noticed about Andy’s love of food was that it wasn’t just about the eating.  He really enjoyed the preparing and he was good at it, certainly better than me!  I think if things had worked out differently he could have made a living out of it or even made it through to Masterchef.

Andy knew the satisfaction that came from a job well done and I think enjoyed his food all the more for having cooked it up himself.  He found he could exercise his God-given creativity in cooking in a way I never have.  (As a teenager I once fed my family French onion soup but forgot to adjust down the quantities of wine given in the recipe – I think they enjoyed it anyway!)

Now I have a love/hate relationship with food.  Much as I love eating it, I hate having to try to count everything to calculate how much insulin to take.  It means that packaged food is easier than cooking yourself or eating out.  You can just read what it says on the label!

But I think Andy understood that food was about much more than calories or carbohydrates.  It can involve great creativity and skill, as well as fun and fellowship.  Maybe I need to put on my apron and get into the kitchen a bit more!

 

Number crunching

Well, yesterday an anonymous donation pushed me past my £1000 target!  Hurray!

Thank you so much to everyone who has sponsored me so far.  I know there will be much more to come too.  You can go to my donations page and give to VHL UK/Ireland by clicking here.

Targets are all the rage.  We want to monitor and measure everything.  We see it in schools, in hospitals, in the workplace and even in the church.  It’s certainly something that people with medical conditions like VHL have to get used to – constant testing and measuring and monitoring.

I’ve had to get used to it too as a diabetic.  Several times a day I test my blood sugar levels and am given a number.  If it’s between 4 and 8 I feel good – that’s a success.  If it’s outside of those figures I can’t help thinking I’ve failed and I agonize over what I’ve done wrong.  Did I miscalculate my carbs?  Or underestimate my activity?  Did I have one too many pints last night?  What was hiding in that sauce?  Sometimes I can find no reason and that’s even more frustrating.

My healthcare team at the hospital have been great and have given me a new bit of kit to measure my blood sugars constantly while I’m walking Hadrian’s Wall.  Hopefully that will minimise the risk of hypos and allow me to respond quickly to problems so I feel like less of a failure.

For my 40th birthday my mum has bought me another bit of technology, a Fitbit Charge 2, and she has very kindly given it to me in advance so that I can use it in my preparation for the walk4andy.  I feel like my 13 year old daughter did when she got her new phone last week!  So many exciting features, so many more numbers to count and measure – my heart rate, steps, calories burnt or floors climbed.  But I worry too that I’m just setting myself up for more failure if I keep insisting on measuring myself in this way.  Aren’t I more than my HbA1c or cholesterol or Body Mass Index or my monthly income or school grades for that matter?

Need a few more steps to hit today’s target!

 

If we are measuring so we can celebrate progress, that’s great, and it’s definitely good to be able to see how much money is being raised for VHL.  But there are lots of things that can’t be measured.  I remember as a child worrying about how I could love both my parents and my brother the same, as if I had a limited amount of love to share out.  I cried with relief the day I realized that wasn’t the case.  I was free to just keep loving, confident that the well would never run dry.  The things that count can’t be counted.

Walking with Diabetes

Prophetic sign? Seen in the diabetes clinic!

So, another complication in my planned walk is my diabetes.  In 2006, when I was 28, I was diagnosed with Type 1 insulin-dependent diabetes, just like my dad was when he was around the same age. (That should have given me a clue, but I didn’t even spot the signs when I was drinking more and weeing more, eating non-stop without losing weight, and generally exhausted – I was a teacher at the time so that seemed pretty normal!)

Thanks to the support I had at Addenbrookes, I’ve been on an insulin pump for the last five years.  The pump drip feeds insulin into my body all the time and is permanently attached to my side through a tiny cannula.  Here it is, my life support machine…

When it comes to walking Hadrian’s Wall, as someone who isn’t particularly active or sporty, I have tried to be sensible, planning to walk no more than about 10 miles in one day.  I’ll take plenty of snacks and make sure I reduce my background insulin.  Having said that, I still managed to have a hypo on one of my practice walks last week!

In the past week I’ve been to see my specialist nurse and hospital consultant to talk with them about my anxieties.  They are a great team and I feel well supported.  My biggest worry is not so much my blood sugar levels as my feet!  They aren’t beautiful (as you can see!) and you should pity my poor colleague who had to wash them on Maundy Thursday, but as far as the walk goes they are pretty much essential.  Without them, I’m stuffed.

What has amazed me is that you can live with a body for very nearly 40 years, and still be discovering new things about it!  I’ve discovered this week that my right foot is more flat-footed than my left which explains why I was suffering a bit more with aches on that side after my practice walks.  (It also explains why I’ve never been a great dancer, although my eldest would say that’s just being a normal embarrassing dad!)

All in all, it’s really helpful to know about these potential weaknesses at an early stage so I can try to do something about it.  Good socks and boots will make a big difference but I’ll be looking for a bit of extra support for that middle part of my right foot!