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!