Scafell Pike (highest land in England)

In recent years I had been wondering if my time walking in the Lake District was over or not. We took the decision to try this out and spent some time in the Lakes over the Easter break. The challenge was to see if I could walk up Scafell Pike or not.

A reminder of the context - I have found that walking can wear me out quite quickly, but that has tended to be at the end of busy days, but not necessarily every day.

My boys (now aged 6 and 9) were also quite keen on the idea of getting to the top of the highest point in England, so they were up for the challenge as well (although I didnt give them all the details of the length of the walk).

My nervousness was principally in two areas - myself - if my legs give up and I'm a long way from the finish then it would be a long and slow journey back to the car, and secondly - the boys - if they get a little way into the walk and decide that its not for them then it would be a tedious journey back down.

Having walked up Scafell Pike a few times in the past I decided to use my favourite route - up from Seathwaite via Styhead Tarn, and then back down passing near Sprinkling Tarns. The weather was looking good, so the mission was go!

We started off a little later than ideal, but the sun was shining and everyone was in good spirits. The pace was set by the boys and their interest in various things that we saw as we went up. It was a fairly slow couple of km per hour, which suited me fine. Readers may note that back in the day I was walking these routes at around 5km/hr. We had lunch by Styhead Tarn, and from here it was time to decide if we should carry on or head back down. The boys were keen, so on we went. From here we were up the corridor route - although the sun was shining it was a bit windy, and we needed all our coats on for the second section. Given it was windy we went for the Corridor Route up, with a final ascent of the scree between Scafell Pike and Broad Crag. We got to the top and had clear views all round.

For the way down we went over Broad Crag adn Ill Crag (without actually going on the summits) and then dropped to Esk Hause, and dropping back down to Seathwaite between Seathwaite Fell and Allen Crags.

My legs were starting to feel it by the time we got back to Stockley Bridge (about 1.5km from the end) so there were quite a few more stops for a short rest on the final section - but we were back in the shelter of the valley by this point so that wasnt a problem.

In terms of kit, I wore my AFO and my walking boots, which worked very well. My eldest had picked up a stick on the way up, and this was passed to me near the top (when we were going up the scree). I was then using this like a walking stick for the rest of the journey, which was good. My overall distance was 16.1km, which took us 9 hours to do. My GPS gave up its battery after 14.3km, buy my fitbit recorded some 36,000 steps on the walk.

The overall conclusion is that I really enjoyed the walk. It was a great family day out and we all had a good time. I'm pleased that I can still get up a hill. The next hill, perhaps, will be something with a slightly shorter route!

Lessons for next time - take hats and gloves, and squeeze an extra layer in the bag. I also had forgotten about the wind, so it will be important to take wind direction into account when planning future hikes with the boys.

Its also been good jotting down the details of my route, and naturally using the names of the fells as they are, without having to look them up on a map, and I enjoyed re-reading the Wainwright books which covered this walk and give the details of the surrounding fells and other interesting things to look out for on the route.

Needless to say, I could feel it in my legs the next day!

Diagnosis plus 10 years

We're not far from my eldest's 10 year birthday, which means that I'm now at diagnosis plus 10 years. Back at the end of March 2009 I met with the genetics counsellors and they took a blood sample. This was analysed quickly and we found out that I had HSP early April 2009 (the results letter was written on 2nd April 2009).

So, This post marks the first 10 years on my HSP journey, and I thought about reflecting on what has changed and what I have learnt in that time.

Physical Changes
So, over the last 10 years there have been some physical changes. Some of these are due to getting older and some are due to having HSP, and there is a likely middle ground where some could be either way.

So, my weight is about the same, my hair is getting grey-er and is receding back across my head, and my eyesight is getting poorer. On the other side, my hearing is about the same, I've similar strength and my sleeping patterns are about the same (subject, of course to now having 2 children!). I group these into the getting older camp.

Prior to diagnosis I could run - my longest run was the Bristol 10km in the mid 2000's. I find it difficult to run more than a short distance now. Back in the day I was also a keen hill walker, making it up to the Lake District a few times a year to regularly walk upwards of 20km a day in the fells. This would be much more of a challenge these days. I am now cycling more than I used to, but I feel that my length without pausing is decreasing.

The other main physical change is my gait and range of muscle movement when walking and moving. I'm getting through shoes quickly, because my feet scrape on the floor, and I cannot move my legs as far as I could in many different directions!

Knowledge Changes
Back 10 years ago I thought I knew a fair bit about HSP, but in reality I knew very little. Regular readers will have spotted that I now keep my eyes out on many different channels to spot relevant things. My knowledge of HSP has increased considerably, although many of the researchers are working at a technical depth that I still do not appreciate.

The other key knowledge area is how our health system works, and what I have to do to get what I want/need. This is more difficult than I was expecting, but I can see the parallels between my work and how the NHS works with pressures being applied to get more done without additional resources.

The other knowledge I've gained has been with the help of you readers of this blog, by contributing your information to my surveys I have learnt a lot about the wider experiences of people across the world. This has helped my understanding of how similar or different my HSP journey is from others, and has helped my understand where there are gaps in the overall HSP knowledge area.

I have also learnt a lot about how charities are run and the responsibilities of being a trustee for a charity, and recently about being the chair of a charity. This has opened up a load more information and connections with others with HSP.

Costs
Here we are in the area of known knowns, known unknowns and so on. I've been doing weekly Pilates for about 9 years and I've been taking medication for about 6 years. This has set me back about £3000 in total, currently about £400/year.

I have had travel costs to appointments which I've not tracked - although most have been zero cost as I've cycled to local hospital appointments. I have also been getting through socks and shoes quicker than I used to, which is another untracked differential cost.

The other two costs are more subjective - time and wellbeing. My hourly pilates and daily stretches and appointments have taken about 38 days time in total (about 900 hours).

On top of this I spend:

• an untracked number of hours a month writing this blog (lets call it an hour or two for each of the 227 published posts), 
• an untracked number of hours per week working for the HSP group (lets call it an average of a couple of  hours a week since I have been Chair - dealing with e-mails and sorting out other stuff) 
• the equivalent of perhaps 3-4 working weeks a year for dealing with my survey and analysis.
• attendance at other HSP relevant meetings and conferences 

That lot adds up to 90 days time in total (2135 hours), with a big step change at the start of my surveys, and another step change when I became chair of the HSP group.

Currently, HSP takes up about 600 hours a year of my time - which averages at nearly 12 hours a week. I'm not including hours spent on my bike as an HSP time - I'd be doing that (or some other exercise) anyway

In terms of wellbeing I'm fairly resilient. My knowledge has helped reduce my anxiety, but I have been a bit depressed at times over this decade. Of course there are many factors which affect this and it would be unfair to blame all my depression on HSP.

The Future
I'm not going to fall into the trap of setting myself objectives for the next 10 years. Things will be very different then - I'll be sharing my house with 2 young adults instead of 2 primary school aged boys. I'm expecting that there will be further deterioration in my mobility, but I'm not going to speculate on that. I hope to still be blogging and finding out more information to post about. I'll be 10 years closer to retirement. Whats left of my hair will most likely be grey and I expect to be wearing glasses. Hopefully my hearing will stay intact.