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.