That freewheel comes in handy again

Yesterday, we went out for a family walk to a place in Surrey called Box Hill. It's a National Trust place, with lots of hiking opportunities and a cafe. I like National Trust hikes. They have marked trails with posts to follow. When the boys were little, they used to 'spot' the next arrow so that we always knew where to go.

The walk we did yesterday was called 'Hill Top Stroll'. I can only assume a very able bodied person gave it that name. Don't get me wrong, it was lovely but stroll is not a word I would have used. I am so glad I had both my freewheel and handles.

Some of the route was quite steep and I found one section that was people-free and not too bumpy to go whizzing down. Neil tried to capture this but it didn't quite work. In spite of the photo not doing what he wanted it to do, I quite like it. I was obviously going so fast, I turned everything white!

Parts of the walk were not accessible, even with my freewheel, due to steepness, sharp stony ground and tree roots so I was very glad that Josh and Neil helped me to navigate these sections on foot - Josh walking backwards, hanging on to me for dear life - whilst Andy got the wheelchair through.

Afterwards, we found a picnic table and got together for the obligatory family photo...

Two tips for the day

1. In busy places, take the freewheel off. I've seen pictures of people who have a holder on the back of their chair for it. I never got one of those but I'm hoping to sort that out when we visit the Mobility Roadshow. Cafes and other busy places are not easy with the freewheel still attached. Thankfully it's really easy to just unclip and leave with the family.

2. Take handles off when in places with lots of doorways. I was going through a doorway and one of my back wheels got stuck on the little ridge. As I went to give myself a push, somebody from behind decided to 'help' me out and push me. This pushed me sideways into the doorframe, trapping my knuckle of my left hand between the wheel and the frame. I've got a cracking bruise and swollen hand now. One day, I would love to train people in how to genuinely help wheelchair users.

Getting out and about 1

There are two issues which interest me at the moment, regarding wheelchair use. The first relates back to a BBC article that implied that disabled people are an afterthought when it comes to accessibility. The second came from various online discussions with other wheelchair users who say people stare at them when they go out.

I'm going to pay more attention to both of these things as I go out and about over the next few weeks. I started with an easy one, yesterday. I visited an indoor designer outlet, just outside York. I don't know when it was built but we have been shopping there since before we moved to Finland, so that's over 7 years ago now.

Accessibility

There is loads of blue badge parking - an entire car park full, in fact. It's not very well signposted though, so on a first visit, it might not be easy to find. As you enter the complex, there are two lanes to drive down. For accessible parking, you have to be in the right hand lane and then go past the first car park and it's on the left just after. The car park is flat and there are plenty of spaces. I find it dead easy to get myself into the centre.

A while ago, when I wrote about getting started with self-propelling a wheelchair, I recommended somewhere like this for practising. That's because the floors are smooth and flat, with no camber. All the shop entrances are completely level. I normally wear gloves for propelling but in places like this, I don't bother. It's easy enough to just use my bare hands.

There is a food hall upstairs and there are two lifts. They aren't huge though and at peak times, queues build up. Yesterday, we had to queue for the lift to get back downstairs after lunch. It made me think about a 'how to' video I saw about using wheelchairs on escalators. I'm chicken though, and don't want to try that.

Staring

I'm in various online groups where disability issues get discussed. One that often comes up is that people stare at you because you're in a wheelchair. I've never noticed this but I'm not the most observant person, so I thought I'd check it out with my not-so-secret camera. I've edited it down to 2 mins but I promise I didn't edit out a single starer! Honestly, nobody gave a stuff about me. Most people are just going about their own business, without a thought for what I'm doing.

It might be a UK/US thing. It might be a north/south thing. I don't know why some people are or feel stared at but I got no starers. The only people who occasionally look at me, are kids and teens who notice my seriously cool, flashing front casters - and who can blame them?!?! They are designed to be noticed and admired!

Video

This was my first attempt at using my new wheelchair camera bracket. It took a while to find a place to attach it and get the angle right. Well, it's still not right but I'll keep working on it.

Exercise and burning calories

BBC Ouch have some really interesting podcasts about disabilities. This morning, I listened to one about a news article. Some clever chap had suggested that chocolate bar wrappers should have icons to show how many minutes you would have to walk, run or swim for, to burn off the bar of chocolate. The people who do the podcast were sharing their opinions on this.

It got me thinking about how wheelchair exercise compares with able-bodied exercise and being me, I did a search for studies on this matter... and I found this one:

They did a study of other people's studies (that's what makes an academic) of wheelchair exercise and they explain how many calories you burn for different activities. I've just picked a few that interested me.

Here's some information from the table:

So just sitting in my wheelchair, resting, I burn up 0.8 kcals per kg of my weight per hour. Now I rarely do anything for a full hour, so I worked it out per minute and found that I burn 1.4 calories per minute, just by sitting on my backside.

I found the different categories of wheeling interesting. Personally, I think wheeling on carpet is much more tiring than wheeling outside. Wheeling around a supermarket or shopping centre is probably the easiest surface and I would burn 3.85 calories per minute by doing this. So for a 30 minute shop, I'd burn 115.5 calories. Not bad for retail therapy!

My favourite exercise is going for walks in the park or around the sea front. That would be outdoor wheeling and works out at 4.55 calories per minute. So for a 45 minute walk, I would burn 204.75 calories.

I agree that grass is serious stuff and the most I am likely to do is 5 minutes. That would consume 35 calories but leave me exhausted. So I think I'll stick to shopping and going to the park. It seems the most beneficial and I enjoy it.

Just out of interest, not that I know anyone who does this, but Nordic sit-skiing uses the most of all activities, at 11.8 kcals/kg/hour. That would be 20.65 calories per minute for me. I couldn't find one for downhill sit-skiing but I'm hoping to have my first lesson soon. Even if it only burns half that amount, it would still be great exercise!

Support for family life

I don't usually use my blog to advertise on behalf of others but today is Autism Awareness Day and Care for the Family posted this on Facebook and it made me think how much they have helped me and my family, as we have journeyed through life.

Care for the Family - Additional Needs group

Care for the Family

Care for the Family is a charity that was launched in 1988 by a lovely Welsh guy called Rob Parsons. He was a lawyer and became affected by the number of people seeking a divorce. He wanted to do something to protect marriages and prevent problems from becoming so serious that divorce was the only option. At a training weekend that I recently attended, they showed a picture of a fence at the top of a cliff. The analogy was that it is better to put protection in place at the top of the cliff than send an ambulance to the bottom. It is better to actively strengthen marriage and family life when things are going well, than to have to pick up the pieces when something has gone wrong.

When Neil and I were newly-weds, we attended our first course by Care for the Family - Marriage Matters. We attended big events with inspirational speakers, including Rob Parsons, and I read loads of the books that Care produce. That input certainly helped us through the ups and downs of normal married life but never more than when our lives were completely changed by my disability. The cliff analogy is certainly true for us. Care taught us how to strengthen our marriage when things were just normal and okay, so that when disaster struck, we were already in the best place to survive it. Of course there is never 100% certainty when you are talking about relationships but our experience is that it is worth giving yourself the best chance.

Care for the Family - Additional Needs

I got involved with this wing of Care for the Family about eighteen months ago. They started a Facebook group and as a mum of a child with Asperger Syndrome, I joined the group. By then, my son was pretty much an adult and although we had experienced some serious challenges in his childhood, he had grown into an amazingly wonderful young man. I often posted positive comments to encourage other mums and dads to hang in there and fight for their child with additional needs because it's well worth it when they come out the other side.

After a while, one of the group leaders asked me to become a befriender. This means that when parents are going through tough times with their additional needs child, they can be paired up with a mum like me to talk and just feel that they are not alone. We can chat on the phone or exchange emails and I love being able to tell other families that their battles will be won and are worth fighting.

If you have a child with any kind of additional need and if life is feeling tough or overwhelming right now, I would strongly recommend getting in touch with Care and asking to be befriended. You can find out more about it here.