Catch-up from Helsinki and the Humber Bridge

Long weekend in Helsinki

I could write forever about how much I had been looking forward to being back in Finland for a weekend, even though we didn't make it all the way to Oulu. I could bore you with pages and pages about meeting up with friends, which was so wonderful. But what is Helsinki like from an accessibility point of view?

We arrived in Helsinki by train and had planned to walk to the hotel - about 1.5 km towards the harbour. The trains were brilliant! There was one wheelchair accessible carriage on each one, with plenty of space and if you press the lower wheelchair door button, the floor slides out to meet the platform to provide level entry. I thought that was quite impressive.

The city itself has a range of wheelchair unfriendly surfaces, such as cobbles and gravel paths but I knew this before we went, so I took my Freewheel with me and that helped immensely. It was also noticeable how effective my Loopwheels are at taking out some of the bumps. I was very grateful for both!

Also, most of Helsinki is on a hill. I wouldn't say a steep hill, more like a long, slow, consistent hill. It was one of those places where I would have needed to be pushed all the time before I did that BBC challenge thingy. Now though, my arms and shoulders are much stronger and I managed to self-propel for the most part.

Perhaps the things I was less prepared for are more about people. I'd forgotten about the door-holding thing. Finns don't hold doors open. They don't automatically look over their shoulder as they go through the door and see they are being followed and pass the open door to the next person. It's not in their culture like it is in ours. Also, there are less automatic doors in shopping centres and railway stations that there are here. I got the feeling that there's a basic assumption that a wheelchair user wouldn't be out on their own... and actually I didn't see a single other self-propeller all weekend.

What made me a little more sad was that children looked at me with a very suspicious look. I couldn't work out whether they were scared of me or just unsure of what I was. If I'd got a euro for every frowning child that stepped back and hid behind their parent, I could afford another visit very soon. Thankfully, our friends' kids weren't like that and we had a great afternoon with them!

Humber Bridge Santa Run

Last Sunday, me, Neil and the boys and my sister and her girls did the Canine Partners fun run across the Humber Bridge and back. I've wanted to cross the bridge as a pedestrian for ages but never got round to it, so I was very excited.

Neil had warned me but I hadn't really believed him... the bridge is quite a hill until you get to the middle. Of course then it's still a hill but going down! I paced myself well and managed to do the whole thing unaided, except for the ramp up to the bridge, which was so steep I'd have gone over backwards without Neil there.

It was lovely to be part of a proper event, fantastic to cross the bridge and take in the views up the Humber estuary, and great to cross the finish line with my niece. We ended up going ahead of the rest of the family and she jogged the return crossing with me.

Adaptive skiing lesson 6

It was really busy last evening, when I had my 6th lesson! The slope was partially cordoned off for freestyle stuff - jumps and pipes - so parts of the slope were quite narrow. The combination of obstacles, a lot of people and lots of lumps and bumps in the snow made for a challenging lesson.

Adam had got the new lift pull working and it is much better than the old system! In the video, when I'm at the top, you can just see a yellow strap, lying loose around my legs. That is what now pulls me up the lift. When we get to the top, there's a catch on the handles at the back and Adam just pulls it (like a bike brake) and off it pops. Unlike the previous system that bursts off and hits you on the head and then has to be totally taken off and carried down, this just reattaches and you can ski down with it in place, ready to get back on the lift.



Thanks to Dan (the only helper to come back a 2nd time) for videoing when it was so busy.

Neil also had a snowboard lesson at the same time as my lesson. He looked to be doing well. He's on the main slope now but mainly from half way. I passed him a few times but I was concentrating on not taking out any kids or crashing into anything, so we didn't chat much.

I've got the hang of moving myself around now. Although I'd feel a little nervous about going up the lift on my own, I'm pretty sure I could get to it and get on by myself. The pull that I would use for getting off is tricky though, so Adam's going to work on some adaptation to make that better. Then, next lesson, the plan is to go at a quieter time and learn to do the bottom half by myself - lift and no tethers. That is a really scary thought but exciting at the same time! It's easy to take risks and just go for it when you know someone has got hold of you but ultimately, I want to ski free.

Adaptive skiing lesson 5

Oh my goodness! I am still on a high from last night's skiing lesson! For the first time, last night, I really believed that one day I will be on the slopes with Neil and the lads, doing my favourite holiday thing.

Let's just go back four years. It was October 2012 and the first slopes had just opened in Levi. The boys were desperate to get out there and I wanted to know whether I would be able to ski at all. So off we went. They bought their ski passes and hit the lifts. I went over to Lastenmaa (children's world) where the slopes are easy. I tried but half way up on the lift, I was in agony and I couldn't ski down. I had no control over my left leg at all and my back and calves were killing! I went back to the car and sat and cried and cried for ages. I felt stupid! People in the third world are starving. We were supporting a friend who had lost both her children as a result of human trafficking. Not being able to ski was really not a big deal. It made no sense. But of all the things I lost through cauda equina syndrome, that was the one that hit me hardest.

So, back to last night. After my last lesson, I felt like I was making some progress and would be able to eventually ski with a ski buddy, on tethers... which is better than nothing. So I started thinking, what would I need to do to ski independently and there are some things I figured I would have to learn to do:

• get into the sitski and fasten myself in
• move myself around on the flat (to get to lifts, etc)
• do the lifts myself

I was really excited when I arrived because Adam showed me a new lift gadget they had bought, which would make the lifts much easier and almost independent. That was great! Except that it wouldn't work, so we had to use the old kit. Shame, but they'll probably fix it for next time.

I had a go at moving myself around before we set off up the lift but I couldn't get the hang of it. When we were at the top, each time though, I practised... and now I can do it! By the end of the lesson, I could move myself forwards and backwards and turn around. 

As usual, I got our extra helper - Dan (I think but I'm awful with names) - who was by far the best helper we've had so far, to video one of my runs. Here it is...

I can't wait for my next lesson! I can really see the possibility of complete independence now. So what else do I want to learn, apart from continuing to practise my turns? Well for independence - as in, no tethers - I've got to think safety. So the next thing I have to learn, is to stop mid-run. If I was on a proper piste and something happened, I would need to be able to stop immediately and help out. I guess the other obvious thing is to be able to get upright again without help if I fall over. 

Got my Freewheel back

You may remember that several months ago (July), my Freewheel broke. Now don't get me wrong, I know that I have a lovely wheelchair that is easy to get around in and I am very grateful for that but having a Freewheel enables me to go further and do things that I can't do easily without it. I know that sometimes things break and have to be fixed or replaced but this just didn't happen as it should and we ended up having to get quite shirty with Recare, who had originally supplied it.

Now that the matter is sorted, we know what went wrong. My Freewheel was originally set up by Recare... by a bloke who no longer works there... but it was set up incorrectly, with a significant missing part, that we knew nothing about. We should perhaps have suspected something when we sent it back and Freewheel (via Recare) apparently accused us of misusing it. Well we got new parts to replace the broken part. We did research online and discovered information about the missing part. Eventually, we contacted Recare and explained what the issue was and eventually agreed with them that they would send a completely new, boxed Freewheel and we would set it up ourselves. Even then, that came with warnings (bordering on threats) about how we would have no comeback if we set it up and it broke again. I think they still thought it was our fault!

Well it came just over a week ago and last weekend, I used it again for the first time. It felt so lovely and smooth. Rough ground was like nothing! We went for a family walk in some of my favourite places that would have been really difficult without it. So I just want to share today that I'm very grateful that I have this dandy little attachment...

 

Do your homework!

About a year ago, we spent a week in Cardiff. We chose Cardiff because my brother lives there. He's doing his PhD at the uni and will be there for a good few years. I never got to see his place in Kent, where he did his degree, so we wanted to see his new place.

We stayed in a cottage in Porthcawl, which was cheap and was all on the ground floor. It was an absolute nightmare for me! Getting in wasn't too difficult - there were a couple of steps but I managed. The bathroom was the worst thing - shower over bath, nothing to hold onto, and the bath moved, making me feel very vulnerable. Neil had to help me every time I showered, taking all my usual independence and making me feel quite low.

This year, I was more careful and did my homework... thoroughly. We're in Cardiff again, this time for my son's graduation (more on that later in the week). We're staying in a lovely, accessible apartment, with wheelchair access and a wet room.

Words cannot express the difference it makes, having somewhere that is right for my needs. This apartment is not perfect. The wet room could do with some support rails for the toilet and shower. In general though, I can do stuff without needing much help, and that gives us all a better holiday.

4th adaptive skiing lesson

This week, I was in a training session about Ofsted and lesson observations. The main learning point was ILP! Impact on Learner Progress. Ofsted don't care how you teach, what methods you use, how good a performance you put on. They want to see evidence of learners making visible progress. Well, if that's all true, Adam, my skiing teacher, must be outstanding!

After a couple of warm-up runs from half way, we went up to the top. The first good thing is that they've got a new lift puller thingy. The old one broke and they borrowed one but the quick release sometimes didn't release and sometimes released when you didn't want it to. The new one is really good. It stays on until you pull the string and then it releases. Brilliant!

The first run down on tethers was scary! I wasn't sure I'd be able to control my turns. It's alright when you've turned and you're going sideways across the slope but at some point, you have to head straight down whilst turning in the opposite direction and that's a panic moment. It was okay though the first couple of times, because Adam kept the tethers quite tight and short, so I could still feel that he was there.

Later in the lesson though, he loosened the tethers and stayed further back. I could feel occasional help with speed but I think I was doing the turning completely by myself. That was really exciting! For the first time, I realised that my dream of skiing completely independently is possible. Adam still insists that I would have to switch to a monoski though and that's less scary now but still quite scary.

This is what I want to be able to do:




In this video, biskiing or dualskiing looks quite possible and I do think it gives me better balance. Maybe I'll have to try it at a resort some time. I'm definitely getting the urge to go skiing in Levi. There are some slopes there that I think I could manage with minimal help. Children's world (lastenmaa) could keep me entertained for a while.

Weight control in a wheelchair

Weight control is really nothing to do with disability... but having limited mobility certainly doesn't help! Although I haven't always been fat, I've always had weight issues. As a child, I was like a rake. At school, I was bullied constantly for being so thin and that caused a lot of pain. As I watched my friends grow into curvy young women, I still felt like I had the body of a child and I hated it!

Then I had my babies and something in my metabolism must've changed and that was it. I put weight on and eventually became overweight and then obese. Actually, I'm happier being overweight than underweight. Okay, so it's not very healthy but I don't look in the mirror and hate what I see. I'd be fine with it, if it wasn't for the impact it could have on my health.

Back in June, I got involved with BBC Get Inspired and did a challenge to get me to be more active. It really was a challenge at that time. Although I'd got used to my wheelchair and could get myself around in it, I didn't have the strength and stamina to go very far. If we went out for a walk, I would do a little bit and then Neil would have to push me. What I wanted to get out of that challenge was the ability to propel myself several kilometres, without needing a push. I didn't get to 5km, my goal, but I did build up my upper body strength and stamina.

That gave me the confidence that if I want to do something, even something that seems impossible, I can.

As the 30 day challenge came to an end, I started thinking about my weight and Neil and I both decided it was time to lose some. I didn't want to pay for Slimming World or Weight Watchers but did want a plan of some kind to guide us in the right direction. That was when I found the NHS Choices plan. It's basically a combination of keeping calorie intake down and doing more exercise.

Once we got started, and because we (well Neil) tend to cook all our meals from scratch, it was actually quite easy to keep daily calories down to around 1400 a day. Then you have to do a mixture of exercise. Strength exercises are important to build muscle because that burns more calories than fat. I was fine there as I do twice daily physio, which is all strength stuff. What I have never done, until now is use it to build upper body strength. Over the last 8 weeks, I've gone from 1 kg exercises to 3 kg.

You also have to aim to do 150 minutes per week of aerobic exercise and that's where low mobility presents a problem. It isn't always easy, especially when I work full time, to get enough aerobic exercise. Here are some of the things we do:

1. Swimming - fortunately, I've always loved being in the water. Swimming is great exercise, whichever stroke you prefer. For me, the added advantage is that it's indoors (no wasps) and the water keeps me cool as I go. I hate being hot! We're trying to swim 2 or 3 times per week before work.

2. Park laps - We tend to wait until sunset, when all good wasps have gone home to bed, and then we go to the park and literally do laps. Two laps is just over 1 km. I use Google Fit on my phone to measure time, distance and speed - that keeps us motivated. I also have a Spotify playlist, which I have running from my pocket as we go.

Each song, I picked for a particular reason...

I'm gonna be - Remember this being the Comic Relief song? It's the connection with Lou and Andy that I like. As I roll around the park, I sing along, "I'm gonna roll 500 miles..."

William Tell - Apart from this being a seriously cool number, have you ever heard The Mom Song? It just makes me giggle and keeps me going.

Alive - I needed one song to remind me where God is in all this. I like this one because it talks about dark times but focusses on being alive and God being alive in me. And if I've got God living in me, I'd better give him a decent go of it!

Walking on Sunshine - I hate sunshine! The one thing that is most likely to stop me exercising is the sun, especially that hot, summer sun! So I picked this song to try to persuade myself that it's nice. It hasn't worked yet though.

Jack's Wheelchair Song - It's awful! Terrible song! But by the time I get to this one, I'm getting hot and tired. I sing along, "The wheels go round and round on my wheelchair..." and it keeps me propelling. I try to propel in time to the music.

The Lion Sleeps Tonight - Okay, I confess, I have no idea why I picked this. I might delete it.

These Boots are made for Walking - And these wheels are made for rolling! My nan used to sing this song to me and walk her fingers over me and it used to make me really laugh. Anything that reminds me of my nan will keep me going. She's 92, has dementia, lost the love of her life a couple of years ago, and yet is one of the most positive, cheerful people I know.

Road to Nowhere - By this time in the laps, it's beginning to feel like that! I wish the park was bigger. The downside of laps is they get boring after a while. However, the path is flat and has no camber, so it's easier than going on normal pavements.

It's Raining Men - I don't want the men. I've got Neil! By the end though, I desperately want rain!

3. Shopping Mall - When I say I don't like sun and heat, I really mean it. Some days, even waiting for sunset just isn't going to happen and on those days, I drive to Meadowhall or some other mall and do it all indoors. Meadowhall is good because it has hills. It's the only mall I know that, for some bizarre reason, didn't get built all on the level. You go down and then up and then flat but they are gentle(ish) ones.


So, I totally get it when people tell me they can't lose weight because they're 'in a wheelchair' and I agree that it is difficult but it's not impossible. You've basically got to consume less calories than you burn. I like my food so I'd rather exercise more and not give up all my favourite foods. The other week, we even had fish n chips on the beach but that same evening, we walked/rolled over 10 km! We ate a lot that weekend and yet I still lost a couple of pounds. Incidentally, so far I've lost a stone and a half in 8 weeks. I still need to shift another 3 stone to get anywhere close to a healthy weight but we'll keep at it and see how we go.

Feeling disabled

Many of you know that I've recently started my next Open University module. It's about supporting disabled students with online learning. In the first couple of weeks, we've been discussing different models of disability and that's led to discussions (based on the social model) about whether and when people feel disabled.

Asking for help

It's inevitable. At some point, we all have to ask somebody to help us with something we can't do on our own. At work, I hate doing this. It makes me feel disabled. Quite recently, a chap that works in one of my centres has become 'mine'. I am now his line manager. We always got on well but now we work more closely together and sometimes actually get to chat beyond the superficial. Also recently, there have been a couple of occasions when I've not been able to get around the centre as easily as usual because of room layouts being changed and I was having a bit of a moan about this. This chap offered an asking for help idea which works for me. He said, if something needs moving, don't ask me to move it, just mention that it needs moving.

So, on Tuesday morning, we were all in training. I'd got stuck on a phone call and arrived a bit last minute to find the room had been rearranged and the tables at the front were the wrong way round for my chair to fit under them. I said, "These tables need to be the other way round really." He was so quick off the mark. Just moved them. Within the minute, I was comfortably installed and relaxed. The training was great too.

Asking for help can make me feel disabled but with a few friends and coded messages, it doesn't have to.

Vulnerability

For the most part, I rarely feel vulnerable as a disabled person. Most of the time, I can do what I need to do with minimal help. Like on Monday evening. I collected my new car. I used my wheelchair for the paperwork, signing and handover but the guy at the dealership was great and I didn't feel at all disabled. I was just me.

It's when things go wrong that I feel disabled and that's where society comes in. It's how things work that cause the problems, more than my actual impairments. Also on Monday, my medication and catheters order was due to arrive. I get it delivered to work because I know I'm not going to be home. If I'm at a different centre, I just collect it on my way home. It usually works. One of my medications, the doctor will only give me 30 days at a time. SIA Healthcare do my orders monthly, so I can't build up a safety buffer... and this week it's all gone wrong.

Parcel Force have delivered my stuff to the wrong place. It's taken the best part of the week to find out where and when we did, they were shut and nobody could find the package. The Parcel Force man didn't give a stuff, saying it was only a small package... as if that makes it less important. Meanwhile I've run out and started getting side effects. I also had a migraine yesterday, possibly from the stress or possibly from the chemical imbalance of suddenly withdrawing.

This has reminded me of how vulnerable I am. Yesterday I was at work but so poorly. I stayed because my colleagues are so good and I felt safe there but it was horrible and I felt disabled and weak.

Moral of the tale

This week, I'm going to be more aware of the need to empower those around me, regardless of disability or any other factor. Let's all help without needing to be asked and think about how our mistakes might affect others. And let's be the best we can be and help others to be the best they can be.

3rd adaptive skiing lesson

Just got home from my 3rd lesson and it finally feels like I'm beginning to be able to do it independently. We started off with one bucket run from the top - Adam, my teacher, holding onto the back and steering. After that we did several runs from half way, with me doing the steering and Adam holding tethers. I asked how much he was controlling my speed and he said about 80% is me and 20% is him. Well that's better than my first lesson where it was 100% the teacher and 0% me.

Towards the end of the lesson, Neil braved the cold and took a photo and some video of me. This one was at the bottom of the slope. Adam needed to untangle the tethers, so I had to hold myself up and steady while he sorted them out.

In this picture, you can see that I'm quite low to the ground, which helps with my balance. The first bi-ski I used, at ChillFactore, was higher and I got the feeling that I would never be able to balance in it. I like the design of this one better. It's a bit minimalist - just three straps holding my legs in place - but it's reasonably comfortable. I'd prefer a more padded seat really but you can't be too picky with borrowed equipment.

In each hand, I have an outrigger. This is rather like crutches with little skis on the end. If you squint and look very carefully, you can just see a string going from near my thumb to the pole. If I pull that string, it flips the skis into the straight position. They have little spikes on the end that I can dig into the snow to hold myself still. When I'm skiing though, I have the skis down flat and use them to push myself from one side to the other. This helps me steer.

Sit skiing has some things in common with regular skiing. Because the two skis are fixed, you're basically parallel skiing the whole time. Snowploughs are not possible. Turning is done by leaning to the side you want to turn towards. This makes each ski go onto its edge and that's when you turn. Last time, I was turning too sharply and I kept falling over. This time, I got the hang of it and by the end of the lesson, I could ski from halfway (the gentle part of the slope) on tethers. On my next lesson, Adam wants me to learn to do the top of the slope, which is steeper. And eventually, he wants me to progress onto a monoski, but I'm still not sure about that one!

Still making my move

During June and July, I took part in a BBC Get Inspired challenge called 'Make Your Move'. The aim was to become more active by getting out for a walk every day... or in my case, a roll. I did the challenge for 30 days but what then?

Well, I enjoyed being more active and sometimes pushing myself quite close to my limits but at this time of year, with all that sun and wasps, there was no way I was going to keep it up through the summer. About that time, Neil and I decided that we really must lose some weight and we found the NHS Choices diet. We're now coming to the end of week 4. I can't claim that it's a magic diet where you can eat what you want and lose 3 stone in a fortnight, but we have both lost about a stone in the last 4 weeks, partly through counting calories and being more aware of how much we eat and partly through more exercise.

We're back to swimming several times a week, which I absolutely love. At the moment, I close my eyes as I glide through the water and imagine myself competing in the Paralympic games. We swim in the slow lane because it is wider and you get kicked less, so we regularly overtake our fellow athletes, which feels amazing!

On cooler evenings though, we still go to the park for a burst of exercise. Tonight was fun with the strong wind. We went full pace for 15 minutes, with my Spotify playlist singing out from my pocket. "... and I would roll 500 miles..." (yeah, right!)


So here's some pics Neil took of me zooming round the park. When he took these, I was riding into the wind, hence the strange face I'm pulling.

Relaxing in the garden

They keep talking of another heatwave but at the moment, it's not too bad. Today has been at least partly cloudy and a reasonable temperature to sit out in my netted gazebo.

I've done my work for the day - given my wheelchair a really good wash down. Neil is still doing his task - mowing the lawn.

We've been trying to make sure we do some exercise every day. I think mowing probably counts for Neil, whereas sitting probably doesn't for me. Problem is, I've got no motivation to do anything else right now. I'm quite happy just sitting here, relaxing.

2nd adaptive skiing lesson

As I'm on leave this week, I booked another skiing lesson, but this time at Xscape, Castleford. My teacher is a chap called Adam and today we had the added benefit of a helper (one of the other teachers) called Tom. I get the feeling Tom fancies becoming an adaptive ski teacher too.

Before my lesson started, just after I'd got changed, a lady in a wheelchair came up to me and was asking about my Loopwheels. Turns out she also uses a freewheel, like me. Anyway, she started talking about sit-skiing and I told her I was about to have a lesson. Her name is Jo and she was a Paralympic skier, though she's retired now and coaches other skiers. She said to let her know next time I have a lesson and she'll come and ski too and give me some help and tips.

So, onto the lesson... I was skiing in this thing - a bi-unique sit-ski.

To start with, we did two or three runs, mostly from the top, with Adam holding onto the bar at the back. That was pretty much like what I did during that first lesson a couple of months ago.

Then he taught me how to hold and use outriggers. They are like crutches with little skis on the end. They help me to balance and turn, only turning was quite tricky. I dug the wrong side into the snow and fell over. That was quite good though. I was really frightened of falling over and hurting myself but falling didn't hurt because every part of me was strapped in and safe. At first, I wondered how I would get back up again but with Adam and/or Tom's help, it was easy enough.

At the moment, I'm quite slow and just working on the bottom half of the slope but next time, he wants to get me up to the top so I can get some speed up and apparently, that will make it easier to turn and balance. I've got another lesson in just over 3 weeks.

Choosing a parasport

Now that I've been more active, getting out as part of the Make Your Move challenge, I feel drawn to try some other sports. I've never been big on team sports, so let's start by ruling those out. If I hated them playing the regular way, chances are I'll still not like them playing in a chair. So, this week, I've been trying to find some different sports to have a go at...

Wheelchair racing

This is what I want to look like...

Maybe that's one of the reasons I love my freewheel so much - it makes my wheelchair look like a racing chair. But it's still broken. Good news though! They are going to repair it, so I've sent it back and I'm hoping and praying that it returns very soon. When it does, I'm tempted to pop over to the Costello Stadium in Hull and get out on a proper track. I could do some timed exercises and see what sort of distance suits me best. 

Of course, if I ever decided to take it up as a serious sport, I'd need somewhere nearer to train and a proper racing chair, but given that it's a summer sport, that's unlikely.

Gym

We get gym membership as part of our corporate leisure centre deal. I've given it a try a couple of times but I could do with some proper coaching to help me know which exercises to focus on. The good thing is that it's indoors and most of the machines have built in fans, and the building has air cooling. The downside is that it isn't very wheelchair friendly and I feel quite self-conscious because I can't do very much.

Table tennis

Yesterday afternoon, Neil and I went to the leisure centre and played table tennis together for an hour. I really love this. It's an ideal sport for playing as a hybrid pair - one able bodied and one in a wheelchair - and I can play well enough to keep the ball going back and forth. We decided yesterday that when I get my assistance dog, one of the first things I need to teach it as an extra, is how to retrieve a delicate ping pong ball. It's hard work, trying to pick it up off the floor in a chair, though I did improve my technique. 

The downside of table tennis, is that our membership only gives us free play during the day, so we can only really play at weekends. Even then, it depends who is on the front desk - some will give us table tennis for free because it's on a badminton court (which is a perk of the membership deal) but others say it isn't mentioned specifically and therefore is charged.

Swimming

I love swimming and would happily do this most days but the pool only has lanes from 7:00 - 8:00 in the morning. The rest of the time, it is a free-for-all and often quite busy. Plus, there's only one accessible changing room, so we try to go when we know nobody else will be needing it. I did once have to stand/sit outside for 20 minutes, waiting for another person to get changed. When my legs gave out, and I could stand no more, I sat in my chair but my bum was wet and that made my seat wet and it just wasn't nice. 

Having said that, we are going swimming this evening, so we'll see if it's a bit quieter for the last hour on a Sunday. 

Sit-skiing

Having had my first lesson at ChilFactore, and loved it, I have now found out that Xscape have reintroduced adaptive skiing. This is the best news ever! ChilFactore is just too far but Xscape is just down the road. So, I have a lesson booked this week. I will be learning in one of these...

I like the idea of a biski, where you sit on two skis but the teacher there eventually has ideas of getting me on a monoski, where the seat is on one ski. At first, I really didn't want to consider this but when I think about it, it can't be so very different, so I could give it a go. For now though, I will be biskiing. 

At my last lesson, the teacher held on to me at the back with a bar but this week, I'm going to be tethered. The main difference is that now, I'll have to get the turns right by myself. The teacher assures me that we will start part-way up the slope (not right at the top) so that I can get the technique right. Who knows though, I might make it to the top by the end of the lesson.

Challenge Completed

For the last 30 days, I've been doing a BBC Get Inspired challenge. Even though I'm not as active as I'd like to be, I do like to push myself and engage in sporting activities. Plus, I want to inspire other people with disabilities to be active and to achieve things they thought they couldn't. So the challenge I've been doing is the Take a Hike challenge. Here are the goals...

Aim - walk/roll every day

I haven't walked every single day but I have walked (or rolled) most days. I've just added up how far I have 'hiked' during the challenge and it's between 28 and 30 km. That is just amazing! What I have loved about this challenge, is that there were many evenings when I would have just sat and watched the telly but being an ambassador put a bit of pressure on me to get out for a walk first. So the challenge has really made me change my lifestyle, albeit in a small way.

Benefits

I don't know about stronger legs but my arms and shoulders have definitely got stronger. At the beginning, I was tired and achy after a kilometre but now I can propel over 3 km before feeling really achy. Even though I've done the 30 days, I really want to keep this up because I'm feeling more confident because of being stronger in my upper body. I feel less vulnerable about getting stuck somewhere and being unable to get myself home or back to the car.

Goal

My original goal was to get to 5 km. I haven't achieved this but I made it to 4 km and that is just fantastic! I haven't given up on the 5 km but time is the biggest issue... and the summer. Once the heat and the wasps have all finished (hopefully October-ish) I'm going to resurrect this challenge and try to get to 5 km at least once a week, with slightly shorter runs in between. However, I have increased my time and distance, something that I will continue to work on.

Next step

My major heartbreak of this challenge was the death of my freewheel. I've contacted the company that I bought it from and they are trying to sort it out with the suppliers but so far, I've been unimpressed with freewheel's response. They are saying it's wear and tear but I only bought it in November and 8 months for such an expensive piece of equipment, doesn't sound very good to me. Because I have no freewheel at the moment, hiking anywhere off-road is... well... off. Plus it really is now above my threshold temperature for being outdoors and the wasps are beginning to bother me. So, I have a plan...

I had an adaptive skiing lesson a while ago over in Manchester. I loved it but it's too far to travel regularly. However, I've just found out that Castleford have resumed adaptive skiing and that's just down the road. So for the summer, I'm going to aim to become an independent skier. I had ruled out monoskiing because of my awful balance but I'm now thinking I might give it a go. If not, then biskiing looks manageable, if a little less independent.

Loopy about my new Loopwheels!

I have been so excited this week, after ordering my new wheels on Saturday! I knew they were due to arrive today and all day, I've been checking my phone in the hope that Neil would have Whatsapped me to say they were here. Eventually, just as I was leaving work, they arrived.

I should have done an unboxing video really but I only thought about that afterwards. I wanted to get them straight on my chair and test them out. I went for a quick spin round the block and they work! Neil is less excited about this than I am. He apparently knew they would work because they are round and that's what makes wheels work. Deep sigh!!!

So aren't they beautiful?!?!?!

Oh, I should probably explain what is so good about them. They are designed with suspension built into the wheel, so when I go over bumps or uneven surfaces, they should take the vibrations and shocks out before it gets to my back. Given that I feel everything through my lower back, any improvement has got to be good!

You can get them in loads of different colours. I chose white to match my wheelchair and because white is my favourite colour. It's the colour of snow and I love snow!

I'm just working out when I can get out for a really long ride. I was hoping to go this evening but we've got someone coming to give us a quote for doing the garden and then we're going to collect Andy from his uni house. Tomorrow I'm at work most of the day but might be able to go out later. We'll have to see.

Wheels, cars and fun

The last two days have been awesome! I'm going to have to break it down...

The Rav 4

We're looking at getting a new car before Neil's no claims bonus expires. Last time, we could only get 20 minute test drives from Ford and Kia and ended up buying a car that is okay but not great. So this time, we're only considering makes where we can get an overnight test drive.

So we collected the Rav 4 on Friday evening after work and drove it all around my work area. Then yesterday morning, we drove it down to Newark. Newark? Yes, because that's where Loopwheels are based.

Loopwheels

I already have my freewheel, which enables me to go over rough surfaces without too much difficulty. Last year, when we went to the Mobility Roadshow, I tried some Loopwheels and liked them but at that time, I had my old chair and my priority was getting a new chair. This year, I got a quote for some Loopwheels. Okay, they're expensive. It's a new product (2013) and a lot of work has gone into designing them. They are wheels with a carbon fibre suspension system built in. As an added bonus, they look dead cool!

The owners met us there specially. They don't normally open on Saturdays. We were there ages, had a really good try-out of the wheels - on gravel, grass, cambers, curbs, etc. I loved them! I ordered them. They'll be here on Friday!!!

Back to the Rav

Having driven the Rav quite a long way on every road type we could find, I have to say I really like it. There's loads of space - I could install an ensuite bathroom and still have room for passengers! From the driver's seat, the bonnet looks massive! I like a substantial car but this is bigger than we really need. The fuel economy was excellent - Neil was quite relaxed and even let me have the air-con on. The boot was enormous too! We could put my wheelchair in with the wheels on and there was still more than enough room for all my other stuff, plus luggage, a dog, some passengers, etc.

Tucson

Immediately after taking the Rav back, we collected a Hyundai Tucson. This was one of the cars we drove at Silverstone a few weeks ago. We popped home for some extra clothes, as the weather looked decidedly threatening, and then headed through the East Riding to Scarborough to see the boys.

It's not quite as big as the Rav but still plenty big enough for our needs. It has several quirky features. For example, it tells you the speed limit on the dashboard and is remarkably quick to change when you pass a new sign. Also, it has 'lane assist'. It detects lane markings and tries to keep you within them. You can easily override this steering back into lane but if you cross the line, it sounds an alarm.

Fun with my boys

I'll write a separate update about my hiking achievements, because the BBC aren't supposed to like advertising and this post is full of it! We went to Scarborough though, met the boys on the beach, took them out for fish 'n' chips and then went for a walk past the Spa. It was just lovely to spend an evening together, having fun, laughing, catching up, etc.

I wish we'd got some video footage of me bombing it down some of the hills. Next time, maybe.

Well that escalated quickly!

My two sons use this phrase when something has been ticking along quite nicely and then suddenly grows in significance or size. Usually, they say it to make me laugh and often to get them out of trouble. Well, I think it sums up what has just happened...

My last post was about doing the BBC Make Your Move YMCA challenge. I tweeted a link (as you do) and over the weekend the BBC got in touch and after a few phone calls, they've invited me to become one of their ambassadors - yikes! No pressure! I wasn't expecting that but I'm really excited about the opportunity to inspire others and prove that the only limitations we have to achieving something are in our minds.

I was finding the YMCA challenge quite easy and not really that challenging, so I took this opportunity to engage with one that would be a proper challenge. So here I go with Take a Hike. Well, obviously I'm not going to do much walking but I am going to adapt the challenge for my part-time wheelchair use. I will do a little bit of walking (I use my chair as a zimmer frame) but mostly, I'll be self-propelling and building up my strength and stamina, so that I can go further. Ultimately, I really would love to participate in a 5K race. I have my trusty freewheel so if I want, I could even do an off road race.

By doing this challenge, I'll be facing some fears (more on that in a tick), working on my mental stamina and continuing the battle to convince my brain that the nerve pains that attack my foot are not real.

I'm starting this challenge at the beginning of summer. Everyone who knows me knows that I hate summer. I'm terrified of wasps and bees... and nettles (though they are easier to avoid) and I don't cope well with heat. Some of my training will be indoors (to minimise stress) but I want to do an outdoor session at least twice a week. This will get me ready for when I'm matched with an assistance dog (I'm on the waiting list) and will hopefully remind me that being outdoors in summer isn't as bad as I think.

I'd love to say that I was skinny as a rake before my injury but no, I've been overweight since having my babies (who are now adults). Recently I've been trying to diet a bit but my resolve is weak. I know from previous experience that when I exercise more, my willpower (or won't-power) increases too. So I'm hoping that as I build my physical stamina, I'll also build a resistance to the temptation of chocolate.

Over the next day or two, I'm going to work out a workout plan. I'll post it here. If you want to take and adapt it, I would be chuffed to bits! Also, if you feel inspired to join me in this challenge, please get in touch. Either comment below or tweet me @finnberrys.

Make Your Move

A couple of weeks ago, I was doing my morning physio and half watching BBC breakfast to catch the news. As the news finished, there was an advert about Make Your Move. It's a BBC campaign to get people to be a bit more active. The ad made it look fun and I haven't been that active recently, so when I'd finished my physio, I went to the website and took their quiz to find out which challenge would be best for me.

The questions weren't great. They were aimed at able bodied people and the outcome was that I should take up hula hooping. Some days, I'd have just ignored it and moved on but I was feeling a bit bolshy and I tweeted them...

Well, they engaged me in conversation and suggested the YMCA challenge instead. I groaned inwardly, as I remembered Neil dancing round Aldi a few months ago because YMCA had come on their store music. Then I had a look and tried it.

From BBC Make Your Move

It's quite short and as I drank my morning coffee, I joined in. It's now become part of my morning routine. It's got me thinking about getting more active again. I've started swimming again a few times a week before work.

Being active with a disability is definitely not easy. It's not that I can't do things. It's just that my body often hurts in at least one or two places, I'm often tired after work, and we're quite busy a lot of the time. It's really important to do what I can though. The last week, I have had more energy after exercising. It's also put me in a good mood before going to work and that is really important to me because I love my job and I want to create a good atmosphere in my adult learning centres.

So even if you find exercise difficult, try to find something that you enjoy and can do without hurting yourself.

What disables us?

Quite a while ago, I read something about social models of disability. I can't remember most of it but the general gist was that physical limitations don't disable a person; society causes the disability. When I read it, I didn't really agree. At that time, maybe I didn't understand what the writer was getting at.

Yesterday, Neil and I visited a couple of garden centres. We've just had a design done for our back garden and we were starting to look for materials, ideas and prices. In general, garden centres are a very easy place for me to visit. There's always parking on site, often with several blue badge spaces. Because there's almost always a coffee shop, there are usually toilets available - nearly always an accessible toilet. Shoppers need to push those big trolleys around, so in general garden centres have level access. Any ramps are usually not too steep and there's rarely any steps.

Garden centres are set up for the needs of their shoppers and it just so happens that garden centre customers and wheelchair users have similar needs. This means that in a garden centre, I don't feel disabled. We don't have to engage in much forward planning. We can just decide, on the spur of the moment, to pop out to the garden centre... and it's all fine.

After our garden centre visits, we continued to visit my parents and my sister. They were going to an event in their village for the Queen's birthday celebrations. It was held at a primary school, though we knew it would be outdoors and predominantly on the field. Grass and wheelchairs are not the best combination, but we knew in advance, so we took my freewheel. With this, I know I can manage most surfaces. We'd checked the weather forecast and as a result, took a jumper and had a waterproof coat in the car. What else should we have checked?

Toilets! Okay, I did think about toilets. I even commented to Neil that they may not have an accessible toilet but generally primary schools have a staff toilet where Neil could have helped me if I couldn't manage. Actually, that disables me. Most people can go to the loo without needing assistance, so I feel disabled when I need help with that basic function. But I had decided it was worth that risk to spend an evening out with my family.

It hadn't occurred to me that the school building would be closed and only one single portaloo available in the corner of the field. This would have been impossible for me without having the door open, Neil helping and the queue of waiting people watching my struggle. Knowing that I couldn't manage the whole evening and then the journey back without a toilet visit (or probably 3 or 4) and having checked that there were no other facilities close by (in the pub) we gave up and went home. This felt embarrassing for me but probably also for my family. The lack of thought by the school and the lack of information on the event flyer meant that I was disabled... to the point of not being able to participate.

I'm still not sure that this social model tells the whole story but yeah, I get it. The physical condition is always there but what society does, makes the difference between being able to participate as an equal or not.

4 years on

People often ask me what happened. Why am I in a wheelchair? Did I have an accident? Well, maybe today is a good day to look back and remember what happened.

Such a lot can change in 4 years. Four years ago, we were living in Finland, in the house that we had almost finished building. I was teaching at Oulu International School. We were leading an international church. Now, we're living in the East Riding, trying to gradually adapt our house for my needs.

Today is the 4 year anniversary of my spinal operation. It shouldn't be. I needed surgery weeks earlier than it actually happened. It was the end of April 2012 when general back ache progressed to cauda equina syndrome. I was walking through the school lobby and a got a static shock from a plastic plant. Within a very short time, I was in severe pain down my left leg and couldn't move or do anything for myself.

We should have called an ambulance but we were scared... really scared! I was scared what they might do to me if I was taken into hospital. We were both scared that the bill for calling an ambulance would be more than what we could afford. So we kept delaying the decision - see how it is in an hour... see how it is tomorrow...

After making phone calls, I was prescribed Lyrica to help with the pain, and 800mg Ibuprofen tablets. It took several days but eventually I was able to be moved without screaming in pain. I still couldn't do much for myself but we managed to get me to the doctor's. By then, my left leg was completely numb down one side and I couldn't take my weight on it. The doctor sent me for an MRI, which showed a huge prolapsed disc at L5/S1.

The following day, I had an EMG test, which confirmed that I had nerve damage to my left leg. The doctor referred me for immediate surgery. That was on 24th May - already too late - but then my referral papers went missing and I didn't get called in for surgery.

By 5th June, I was beyond desperate. I got a Finnish friend to ring the hospital for me. She was really funny. Having had many operations herself, she was quite bolshy with hospitals. She started ringing to ask for an appointment at 8:00 a.m. and kept ringing every 15 minutes until they found me a time slot.

I went to see a consultant. She examined me and looked at the MRI and EMG results. She asked whether I had any bladder or bowel problems. At that stage, I couldn't bring myself to tell anyone that I was peeing without knowing about it. Then she stuck her finger up my bum and asked me to squeeze. I couldn't even feel her finger and apparently didn't manage an acceptable squeeze, as she got straight on the phone to theatre. It's bizarre, hearing someone having a panicked conversation about you in Finnish. I could understand the general gist of it. Cauda equina syndrome... serious nerve damage... leg... foot... reactions not normal. That was the point where I first realised that this was serious and could have long term implications.

They operated that day, removed the disc and some bone and I woke feeling much better indeed. The initial recovery was pretty good. But when they say that cauda equina syndrome needs surgery quickly, they are right. I have permanent nerve damage to my left leg and bladder.

I have managed to regain a decent quality of life but many never do. It's really important to know the red flag symptoms of this condition and seek immediate treatment if you suspect that you have it.

Symptoms of Cauda Equina Syndrome

It may be hard to diagnose cauda equina syndrome. Symptoms vary and may come on slowly. They also mimic other conditions. If you have any of these symptoms, see your doctor right away:

• Severe low back pain.
• Pain, numbness, or weakness in one or both legs that causes you to stumble or have trouble getting up from a chair.
• Loss of or altered sensations in your legs, buttocks, inner thighs, backs of your legs, or feet that is severe or gets worse and worse. You may experience this as trouble feeling anything in the areas of your body that would sit in a saddle (called saddle anesthesia).
• Recent problem with bladder or bowel function, such as trouble eliminating urine or waste (retention) or trouble holding it (incontinence).
• Sexual dysfunction that has come on suddenly.

First adaptive skiing lesson

Last Christmas, my mum had just moved house and rather than try to add Christmas shopping into the chaos, she gave each of us some money. Neil and Josh immediately bought tickets to see Cold Play in concert at the Etihad Stadium. I had wanted to start adaptive skiing lessons, so I put it away until I could get that organised.

I tried to contact DSUK (Disability Sport UK) several times in late winter and early spring but there was never anyone in the office and I almost gave up. Then, eventually, I spoke to a guy who knew them and he said it was their busiest time and to try after Easter. So I did, and managed to book my first lesson at ChilFactore for the same day as the Cold Play concert... yesterday.

Andy came with me and took some photos but he said it was difficult to get good ones because he was up on a balcony and the brightness of the snow made it difficult to focus and get the right exposure. I've done some cropping and autocorrecting just to give you an idea of what it was like.

My teacher was a Polish lady called Barbara or Basha (not sure about spelling). It took a couple of tries to get me the right equipment. The first one I tried was really narrow and too tight around my legs but the second one was pretty near perfect fit. Although long term, I want to be able to ski independently, this was my first lesson and she kept hold of me the whole time.

I was a little nervous anyway, but I was sort of expecting that we'd start from half way up, like you do on normal skiing lessons. So I was a little worried when we went straight to the top without any instructions or anything. When we got up there though, Basha explained what we were going to do and it was absolutely fine.

Ski lift

You can just about see that I am connected to the lift with black straps. They were stored in a bag, wrapped around my legs. I think they were attached to both of us. The lift then dragged us in the usual way and when we got to the top, Basha did something (magic) and all the straps popped off. Eventually I worked out that it was easier if I caught them and held them off the snow while she pushed me round the corner to the top of the slope.

Skiing with the teacher

The bucket seat is attached to a pair of parallel skis (rather close together) and you steer by leaning to the left or right. The first time, she told me to just tilt my head but after that, I learnt how to lean my whole body to go the right way. I'm not sure whether that would have worked though if she hadn't been holding the back... but in time. It feels a bit strange leaning over, as though the whole thing might tip over. Also, I found it much easier going left than right.

Skiing straight

Turning

The lesson lasted an hour. It cost £51 through DSUK and if Neil had wanted to come as a ski buddy, it would have cost him £1. I think that is great value! I'll certainly be going again. I think I'm going to try to get one lesson a month through the summer.

Birds eye view

Mobility Roadshow

About a year ago, Neil and I went to the Mobility Roadshow at Donington Park and that was where I tried out rigid frame, lightweight wheelchairs and decided to save up for one. The show is a great place to try things out, test drive cars and wheelchairs, talk to the experts and chat with other disabled people. So yesterday, we went again - this time at Silverstone.

Exhibition Centre, Silverstone

Test drives

We're both quite into formula 1, so it was pretty exciting just to be at Silverstone race circuit. Part of the track was used for test driving cars. We did two test drives - one for a car that we're already quite sure we like and one for a car that I didn't even know existed. In the morning, we did several laps each in a Hyundai Tucson. It was a completely new car to me and I really liked it. It ticked a lot of boxes for us:

• high-up car
• good visibility
• comfy seats that wrap around legs and back
• huge boot
• can take a hoist

Waiting in the pit lane

In the afternoon, we test drove a Ford C-Max Grand. We had a normal C-Max in Finland, so we were likely to be happy with it. It's a shame that Toyota weren't there, as the other car we are potentially looking at, is the Rav-4.

There was so much other stuff there, that it would be impossible to mention everything, so here are a few of my personal favourites...

Segways

They had wheelchair segways! Neil liked them as much as I did and actually, I think they could be quite a hit with able bodied people too. 

Segway demo

I was a bit worried that they might tip over backwards but I found it incredibly stable. You just lean forwards to go and back to stop. You can steer them one-handed, which means carrying coffee would be manageable. I thought that it might solve the thick pile carpets problem. So we asked how much...

£13,500

...moving swiftly on...

Loopwheels

One of the things I really wanted to try was Loopwheels. Unfortunately, I forgot to get a photo but I've pinched this one off their website...

loopwheels.com

They have got really good suspension and can smooth out a lot of lumps and bumps. We also looked at different types of push rims that you can get for them. They do some with rubber coating. I liked that because when it rains, mine get slippery and really difficult to push. Rubber ones would give better grip. So, I've asked for a quote... I'm expecting them to come in at just under £1000 per pair.

Hoists

It wasn't even worth taking photos because hoists are so boring but we did spend a good hour or two looking at and trying out different hoists for the car. We are likely to get a new car this summer and if we get the hoist fitted at the same time as buying the car, we don't pay any VAT on the car. This is a massive saving!

After looking at millions of hoists, I think we have decided to go for the smallest one. It lifts up to 40kg and my chair is much lighter than that. It has a carabiner to attach it to the chair and a remote control for lifting.

Mountain Trike

I tried these off-road wheelchairs last year, with a view to getting one as my regular chair but having tested it, I didn't think it would be any good for everyday use. This year, I tried it again. Having had several holidays where an off-road chair would have been brilliant, I was thinking off getting it as an extra. The only problem is the price. It's over £4000.

disabledgear.com

You drive and steer it, using the pull handles. The advantage of this is that you don't get mud up your sleeves. What we did discover, which we will almost certainly do at some point, is that they now hire them out for long weekends or for a week or two. If you hire it, fall in love and then buy one, they knock the hire price off the cost. You can't say fairer than that really.