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!