Sunday, 26 June 2016

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!

Me trying out Loopwheels with the owners of the company in the background.

A close up of the Loopwheels

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.

Picture of me wheeling along, being photobombed my my sons

Picture of me being hugged and/or photobombed

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

Wednesday, 22 June 2016

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.

Saturday, 18 June 2016

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...

Tweet about lack of thought for disabled people

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.

BBC girl doing YMCA dance
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.

Sunday, 12 June 2016

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.

Monday, 6 June 2016

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.

MRI scan showing a huge prolapsed disc

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.

Sunday, 5 June 2016

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.

Me and my teacher on the ski lift
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.

Me skiing down 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 down the slope
Skiing straight

Leaning into a turn
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 of me and my teacher
Birds eye view