Christmas Calories

This morning, someone shared a link on Facebook about how wheelchair users struggle to keep their weight under control. It was recommending eating less and exercising more - not exactly rocket science!

So today, in spite of Frank heading our way and even though I wasn't feeling very well, I went for a walk in Morden Hall Gardens (near where we have been staying). It was pretty windy and threatening to rain but we did manage a reasonable walk. 

My mother-in-law, out for a walk with us

Another surface that requires my freewheel

Usually, if we are out for a walk together, Neil likes to push me but that wouldn't have helped with all those Christmas calories, so I did most of the hard work myself today. The only time I let him help was when trying to cross bridges. Some of them were just too steep and I felt vulnerable to tipping over backwards and others had a slight step up. I managed to get the front wheel up but the back wheels wouldn't follow.

I know most people prefer summer for parks and gardens but I love how it all looks in the winter:

Christmas Service

As promised, here are some pics of my wheelchair having its Christmas service.

Brakes

My brakes are a bit fiddly to adjust. You have to either crawl under the chair or turn the whole thing upside down. There are two allen key adjusters that have to be loosened and then you can wiggle the brakes from side to side and up and down. If you loosen them too much though, they all fall apart and then it's a right mission trying to get them back in the right position. I've found it's better to go for little by little. The aim is to get the brake about 5mm from the tyre.

Back support

I need good lumbar support and this is provided through tightening and loosening the back straps. First you have to peel back the padding. Mine is all velcro, so it's quite easy to do.

Then I sit in my chair and feel which strap is the one where my back needs extra support. Count up from the bottom (or down from the top). Then undo that velcro.

Pull that one really tight and then stick it back down. Check that all the others are a little bit looser. Then sit in and check it before putting the back padding back.

Check everything's fastened properly

My chair is all held together with allen key bolts. This means that they do eventually work themselves loose. So it's worth checking that they are all nice and tight.

There! All ready for Christmas! Have a good one folks!

Regular maintenance

After yesterday's little panic of realising my tyres were getting flat, I'm now thinking about what kinds of regular maintenance tasks I should be doing. It goes without saying that when you buy a car, you keep it in good working order, with regular servicing and ongoing checks, so it's just as important to maintain your wheelchair.

Tyres are obviously important. If you've got bicycle type tyres, with air inside, they need to be kept at the right pressure. Mine are 6 - 8 bars. Yesterday, they had dropped to about 2 bar, which meant that when I sat in my chair, they were quite flat. Because this had happened gradually, I hadn't noticed but once they were pumped back up, it was so much easier to propel and steer.

Brakes are another important maintenance check. In the off position, there should be 5mm between the brake bar and the tyre. Too big a gap and the brakes don't hold properly. Too little gap and the pressure on the tyre is too much and they become stiff to handle. Mine can be adjusted by loosening the allen key and then retightening it when it's in the right position.

Less of a safety issue but important for comfort, the back straps need checking. Mine and many others are velcro straps. Each individual strap can be tightened or loosened to provide different levels of support. I need good lumbar support. It's helpful to have someone else to help with this so that they can adjust whilst you sit and assess the comfort levels.

For a while now, I've been meaning to buy some allen keys to keep in my bag, for urgent adjustments. Sometimes my footplate comes a bit loose and needs the connectors tightening. If something suddenly goes, it can be really frustrating but having the basic tools to fix things is really useful. At some point, I'll post some photos and video to show how to do some of these tasks.

A walk in the park

We've popped home for the weekend to be with family and this afternoon, we went for a walk in the park. As we were setting off, Neil noticed that my tyres were getting flat but fortunately my uncle happened to have a compressor in the boot of his car and he got me back up to 6 bars of pressure. Hint of the day - check your tyre pressures regularly if you don't have solids!

Whilst we were out, Andy got another little bit of video of my freewheel. After the last videos, a few people said they couldn't view them on mobile devices, so I've popped them all together with some funky music and uploaded it to YouTube. Hopefully it will view on anything this time.

The Waiting Game

This post isn't wheelchair related but I think it might help others who are playing the waiting game.

Over the last few months, I've submitted various applications for disability related things.

 1. My driving licence - Having come back from living in Finland, where we changed to a Finnish licence, we had three years to switch back to a UK one. We sent them off in August. Neil got his back almost straight away but I had to declare my health conditions and although I've had a holding letter, I'm still waiting. Waiting is always difficult. I don't like waiting. During a waiting time, my mind does strange things, sometimes to protect me in case of disappointment and sometimes just imagining all the what-ifs. My biggest fear is losing my driving licence. I know the chance is slim but it could happen. Or DVLA might restrict me to hand controls or an automatic. Any restrictions wouldn't be the end of the world. I'd just have to change car. The thing is, you can't just change car the day that letter drops on the mat. These things take time and until I know what the situation is, I can't plan for it. I just know that there's a possibility that one day a letter will appear and I might have to ring my boss and tell her I can't drive for a week or two, whilst we change car. Driving is an essential part of my job.

 2. PIP - Personal Independence Payment - You can't apply for this if you haven't been resident in the UK for the last two years. That meant I was eligible to apply at the end of August. I've read horror stories about PIP and the assessment process, so my expectations weren't very high. There are two components to PIP. There's the daily living component and the mobility component. I expected to get the standard rate for daily living and nothing for mobility. Well, I filled in the forms... several forms, all wanting the same information. Then I had a face-to-face assessment. The assessor was lovely. She was nothing like the ones talked about in the press. She said I should hear something by mid-January. Then, last week, I got a letter to confirm that I'm getting standard rate for both components. That will mean such a lot to us. At the moment, Neil does almost everything in the home. He's a full-time carer. The extra money will pay for a cleaner and some respite care for when he goes away. I'm glad that we weren't kept waiting for months and months, like some of the stories on the news.

 3. Canine Partners - Last June I applied for an assistance dog through Canine Partners. They requested a medical report but unknown to me, my GPs refused, saying that they charge for it. The charity obviously don't pay for medical reports but our GP didn't give me the option. So months later, I got a letter from Canine Partners, explaining this. I went into the surgery and asked about it. I ended up paying £25 for the report, which still took them ages. If I'm honest, I'd given up waiting... but... today I got a letter inviting me to an assessment day in February. I'm so excited! Again, it is partly about giving Neil a break. Assistance dogs can be trained to do all kinds of tasks to help a disabled person. Just this evening, as I was leaving work, I dropped my car keys on the floor. My heart just sinks when that happens. Bending to pick them up is painful and such an effort. A dog could have done that for me, as well as helping me load the car, opening the door for me and helping with the washing at home. If I'm successful, the next stage is to go on the waiting list. It could be 18 months or more.

Working Dog by Lisa Norwood

So today, I'm thinking about waiting. Is waiting a bad thing? It's certainly not an easy thing! I was never a very patient person. I always wanted everything now. Over the years though, I've become more patient. Waiting makes us learn patience. That can be hard, painful, frustrating... but long term it helps us grow and become better people. In the last couple of weeks, some of my waiting has ended positively. That makes it easier. But I know that sooner or later a disappointment will come. I use the waiting time to work through how I'll deal with that. Today though, I'm incredibly happy and grateful for PIP and the chance to get an assistance dog. Oh, and I also got a parking fine reimbursed, which was a real blessing!

Freewheel 2

I know I posted a video yesterday of me using my freewheel, but I have to share this one too. We went to the park this afternoon and we went off on a mud path. I propelled for a bit but it was really muddy and my gloves and sleeves were getting filthy, so Neil pushed me. That also gave me the chance to do an onboard film.

Hopefully it shows quite well just how smooth the ride is on uneven ground. You can see that we are moving quite quickly - at a brisk walking pace - and I felt completely safe. Normally, at that speed, I'd be scanning the ground for things that my castors might jam into and then throw me out but my freewheel feels very safe.

Freewheel

I first tried out the freewheel at the Mobility Roadshow in June. We went there with the aim of trying out off-road wheelchairs but somewhat unexpectedly, I didn't like them. They didn't handle well and knowing that whatever chair I settled for would have to be right for all circumstances - indoor and out, work and leisure - I wasn't happy with what I tried.

Then I had a go in a rigid frame chair with a freewheel. The chair was too small for me and very tight, so that wasn't very comfortable but I could tell immediately that the freewheel was really good. It took me a while to save up for a new chair and the attachment but now I have it, I can confirm that it is really useful!

Today, for example, we went into town to enjoy a Christmas event and just get some fresh air and exercise. Town is quite flat and wheelchair friendly but there's always little curbs, lumps and bumps, drains, etc. This video hopefully shows how smooth the ride is and how easy it is to propel along. At some point I'll add a clip to show how easy it is to attach and remove but for now, this should be good.

Next time, I'll wear something slightly more flattering but it is a really windy day and keeping warm was the priority!

Going downhill - don't try this at home!

Although I have a body that sometimes feels like I'm in my 80s, in my head I'm still young and full of life and energy. There's nothing quite like the thrill of going really fast downhill in a wheelchair. I love it! I know it's full of risk - I might crash into something... my front castors might get stuck and I'll go head over heals... I know it might all end in tears. But the feeling of the wind rushing by and being just slightly out of control is wonderful!

We recently went to the cinema to see The Lady in the Van. This was one of my favourite scenes. You have to watch right to the end.



I wouldn't recommend such risky behaviour but if like me, you just can't help yourself, always keep an eye on the road surface and don't hit any lumps, bumps or ridges. Make sure you are well practised in braking - not with the brakes but with your hands on the push rims. Oh, and don't do it in the middle of the road!

Learning to self-propel

I've come to the conclusion that this is somewhat like driving or riding a bike. Some people are naturally co-ordinated, whereas others have to really practise. I was recently asked about technique, which was quite a difficult question to answer because I've never really thought about my technique until asked.

Now I've had time to reflect, the first thing that is important, is to sit as comfortably as a potentially uncomfortable body will allow. Even off-the-shelf wheelchairs often have velcro straps under the seat and back padding, that can be adjusted to give support where it is needed the most. My weakest area is my lumbar, so when Tom delivered my chair, he tightened the back straps at lumbar level so it gave me support there. I was just sitting there while he pulled and yanked on the straps. It was a bit like having a corset fitted.

Another thing that is different on different wheelchairs is how far back or forward the big wheels are. The further forward they are, the easier it will be to manoeuvre but that comes with the risk of accidentally tipping over backwards, as the centre of gravity is higher up. If you're in a new or unfamiliar chair, don't set off with too much gusto or you might just do the scariest wheelie ever and land up flat on your back.

Outdoors is a great place to be but it's not designed for learning about your wheelchair and getting started. My advice - find an indoor shopping centre or big supermarket (preferably off-peak). The floor will be flat and smooth in every direction (unless the builder was drunk, which happens) and you'll be able to propel with minimal effort, leaving you free to get a feel for steering.

Sit back in your chair and dangle your arms down over the wheels. Then reach for the push rims... imagine your wheel is like a clock face... grab at 12 o' clock. Push both hands forward to about 2 o' clock and if you can, do a sort of flick as you let go. On a smooth surface, that should get you moving in a straight(ish) line.

Try doing the same, but backwards. Grab at 2 and pull back to 12 with a flick but just check there's nobody behind you first. Shouting 'beep... beep... beep' in the manner of a reversing lorry can help, if you're not able to twist around.

Finally, try combining the two. Push forward with one hand and back with the other. What happens? Hopefully you turned around. Play with this a bit and you should get the idea of turning. It's a bit like steering a car. You have little bends that you can do one-handed (of course, as a driver, you wouldn't actually do it one-handed). Then you have tight corners that need more concentrated technique.

After you've had a play around going around an indoor shopping centre, you may find that your hands are a bit sore. It depends whether you use mild green fairy liquid (I believe). I do, and so I have delicate, soft skin. Propelling does take it's toll on such hands, so I have a range of gloves to help me out. Cycling gloves are really great. Leather is good or some other material that enhances grip. Padded palms, e.g. gel, are fantastic! It's worth having fingerless and full fingers and some with thinsulate lining, so that all weather/temperatures are covered.

Built to spec

I know there will be those that consider this an unnecessary luxury but even as a part-timer, I spend quite a bit of time sitting in my wheelchair, especially at work. Not only does it help me get around but it gives me a guaranteed seat and much more comfort than wooden or plastic chairs. I want to be able to stay fit enough and sufficiently pain-free that I can continue working for many years to come, so investing in the best chair I could afford, to me, seems worthwhile.

Ottobock Ventus

My old chair was a standard off-the-shelf type, whereas my new one has been made specifically for me. A nice chap called Tom came to my house and measured me in every conceivable direction and then the frame of this chair was built to measure. This required a great deal of patience! It can take 5 or 6 weeks from ordering to receiving a spec-built wheelchair... but it is well worth the wait. There are several good makes: Ottobock, GTM, Quickie... I went for an Ottobock Ventus because it seemed to offer best value for money and was comfortable and good looking.

So, let's see some pictures. It's a nice cool sunny afternoon, so I went out in the garden and took some photos specially for this blog.

The Frame

White is my favourite colour because it reminds me of snow. That's why I chose a white frame. Plus I think it gives it a clean, streamlined look. It's a rigid frame, which means that it doesn't fold in half and has a fixed footplate. The choice of footplate will become clear later on. Without the wheels on, the frame weighs 8kg. It's made of aluminium so that it's as light as possible. Well, you can get carbon fibre ones that are even lighter but they were ridiculously expensive!

In the picture above, you can see a wire going along the base. If you pull that, the back folds down and clicks into position for putting it in the car. You'll also notice that in this picture I have no push handles. I wanted removable ones so that I can choose when to be pushed and when I want to be completely independent.

Push Handles

The push handles are dead easy to slot in and they are adjustable for height and can be folded in.

Armrests

The armrests are also adjustable. They can be raised and lowered or folded back out of the way. Really though, this is only useful when just sitting. When propelling, they get in the way a bit unless they're in the lowest position.

Brakes

I really wanted scissor lock brakes but made a mistake when ordering. At some point, I may upgrade but for now, they do the job well enough. I'm a bit naughty and don't use them as often as I should. The golden rule is to always have brakes on when getting in or out but I think of it more as a guideline than a rule.

Wheels and Castors

I've got 24" wheels with Marathon Plus tyres. My old chair had solid tyres which don't give much when going over lumps and bumps. These are better - more like bike wheels. The tyres are kevlar lined (so my youngest son calls this my bullet-proof chair) and in theory, they are almost puncture-proof. I'm not planning on testing this though.

The front castors are 5" and light up when they go round. It was difficult to get a photo of this. They flash red, white and blue. Okay, I admit, it's gimmicky but it does attract a bit of 'cool factor' attention and it helps me to be seen at night. Wheelchairs don't have lights, remember!

Freewheel

The finishing touch is called a freewheel. This connects to the footplate (hence the choice of footplate) and raises the front castors off the ground. Then, because it's a big wheel, you can easily go off-road. As anyone who uses a wheelchair will testify, uneven surfaces cause big problems. Snow, mud, grass, sand... all these things are a real pain in the bum (literally). The front castors tend to jam in and then you either stop dead or tip forward and potentially fall out. This freewheel means that mud, grass, etc are all doable again. I've only used it twice but when I took my little nieces to the park, it was great! I could chase them over the grass, push them on the swings and roundabout... I felt like a proper aunty again!

Choosing a Wheelchair

I would put choosing a wheelchair on a par with choosing a car or a house to buy. Let's assume that, like me, you haven't been assessed for a chair on the NHS but you have gradually come to the conclusion that you could use one, so you're thinking about buying your own.

There are so many different kinds of wheelchair. How do you know which to get? Let's have a look at some of them and the pros and cons of each one.

Transit wheelchair

This was the first type of wheelchair I tried - at Manchester Airport (see previous post). The front and back wheels are small and someone has to push you. It was fine when being pushed through a busy airport but when I was left in the departure lounge for an hour before boarding, I couldn't go anywhere. You've got to picture the scene. Busy lounge... people dashing around... shops and cafes and toilets. I hadn't been sitting there long before I started wanting to move around but I couldn't move the wheelchair and I was worried that if I left the wheelchair and walked, somebody might take or tidy it whilst I was gone. If they had, it wouldn't have mattered. I'm sure they could find another quite quickly but if that had been my own chair, I wouldn't want to risk leaving it. So I would only really consider buying a transit chair if I didn't want to retain any independence.

Lightweight Transit Wheelchair Travel Portable Folding Wheelchair (Amazon £59.99)

Self-propelled wheelchair

I'll come back to this in more detail next time, as I have had two different self-propelled chairs, both completely different. For now, let's just say that this type has two big back wheels with rims attached and small front wheels. It has handles so that someone can still push you but the big benefit is that you can also propel yourself along with your hands on the push rims. This isn't an easy task to master. You need good upper body strength and unless you are already quite fit, it will take time to be able to manage whole journeys by yourself.

For me, the reason I chose this kind of chair was that it gave me independence and the choice to sometimes walk.

Drive Medical XSAWCSP18BLST 18-inch Aluminium Wheelchair Self Propel with Solid Tyres Blue (Amazon £169.47)

Electric wheelchair

I won't say a lot about these as I have never used one. It's like a normal wheelchair but with various levels and types of power. The obvious advantage is that you don't need to exert your own energy to get around, nor be reliant on a carer to push you. Hills and cambered pavements are much easier and getting up ramps is doable by yourself. The disadvantages may begin with the price but also it is much more difficult to fold it and put it in the car by yourself. It's heavier.

Betterlife Aries Electric Wheelchair Adjustable Folding Powerchair Mobility Aid (Amazon £649)

Mobility scooter

Again, these come in many different types, from folding portable ones to big Harley Davidson style trikes. They are easy to use, provided you are reasonably co-ordinated and they move at a decent pace. I used one for a while but for me, the disadvantage was that once I committed to going out on the scooter, I couldn't walk at all because you can't push them. Also, even with a portable one, I couldn't get it in and out of the car by myself, so I couldn't be independent.

Boot scooter - travel mobility scooter. Disassembles into 5 manageable parts - 2 Colours (Amazon £399.99)

So you have to really think about a lot of factors. How independent do you want to be (or can you be)? Is portability important to you? Do you want to walk and ride or just ride? Is price a major factor? How often/where do you think you will use it?

Next time, I'll give you the low-down on my new wheelchair and why it's the right chair for me.

Why use a wheelchair?

Sometimes, when someone has only (so far) seen me using a wheelchair and then I stand up and walk, they are surprised. One lady recently said what I'm sure others have thought, "Why do you use a wheelchair if you can walk?" I guess it's a valid question. I'll try to explain why I started using a wheelchair and also when I now choose to use it.

It all goes back to when we were planning to leave Finland. I was flying back and forth to the UK for job interviews, without Neil or the boys to help me. The first journey, I got there okay, though I was extremely tired and my essential tremor went into overdrive. The journey back didn't go so well. I drove to Manchester Airport and returned the hire car and then got the bus to the terminal. I checked which terminal but I must have looked at the wrong flight because I ended up at the wrong one, with my crutches and all my luggage. I went inside and the first person I saw was one of the assistance crew. I asked him how long it would take me to walk to the right terminal. He looked me up and down and replied, "At your speed love, about 45 minutes." He must have seen my face, as he quickly offered me a ride in a wheelchair. I was going to refuse but I realised that I could miss my flight if I walked, so I accepted his help.

I thought I would feel really self-conscious in a wheelchair. I thought people would stare at me. I thought I wouldn't like being pushed. Initially, all of those were a little bit true but when he bypassed all the queues and got me checked in, through security and boarded and I realised I wasn't utterly exhausted, a penny dropped. I could start going places and doing things without being constantly in agony and feeling like I was about to collapse.

Now, I use my wheelchair so that I can go out, enjoy trips, enjoy work and not have to worry about when my strength will run out. Before, I avoided most family outings because I knew that after a short while I would want to go home. Now, I don't think about that at all.

Also, my injury left me with lower back pain if I sit on a hard surface or the wrong kind of chair. My wheelchair is extremely comfortable and supportive for my back. It means I can sit wherever and whenever I need to without causing more pain.

So basically, yeah I can walk. I even enjoy a short walk and my wheelchair helps with that. I can hold onto the back of my chair and walk and then sit in and propel. I can keep swapping. It gives me options and it puts my life back in my control, rather than my pain and exhaustion levels controlling me. When I do this, my official line is that I'm a part-time wheelchair user. Unofficially, I'm doing my Little Britain thing!

Brief History

I'll try to keep a long story very short, to explain how come I'm a part-time wheelchair user.

From Feb 2009 to Aug 2013, we lived in Oulu, a lovely city in the north of Finland. While we were there, we built a house (as you do) and while we were building, I hurt my back. Then, one day, I got a static shock off a plastic plant at work and very soon, I was in a proper pickle! I couldn't move and I had the worst pains in my left leg. Fairly soon, I lost sensation down the side of my leg and in some other places that I shouldn't mention. I realised too late that I had cauda equina syndrome (CES) and had surgery to remove a badly prolapsed disc but it was too late. Nerve damage to my leg and saddle meant some serious changes and we ended up back in the UK, trying to work out how to muddle through without going crazy.

So here's the new me. Sometimes I use a stick:

Other times I use my wheelchair:

Only that was my old wheelchair. Now I've got a super-duper new snazzy one, which I'll be using from now on and that's the one I'll be using to pass on some tips on how to get around and how to begin to feel normal again.