Exercise…..

This post kind of leads on from my last post about tech….and most importantly, my clever new apple iWatch which tracks the number of wheel rotations I do a day. When my husband got his fitbit last Christmas, he very quickly became totally obsessed with the number of steps he did each day…..and I, supportive & loving wife that I am, mercilessly took the piss. Since then, I have had to plead for his forgiveness, as I too, have converted to the other side. The beauty of hindsight…..and all that.

Only, when you’re paralysed, exercise isn’t quite so easy. You can’t just go for a brisk walk or a short jog and a half hour swim would take more like 3 hours, all said & told. My daily goal, push wise is set at 3,000. I have to keep on the move throughout the day to achieve this, but it is doable with a bit of thought & planning. We have also worked out that 1 push=approx 5 fitbit steps, so it’s not quite as low as it seems. I am not taking these figures as red. Far from it. I know they are just a guide. But it does make me more mindful of getting moving, rather than sitting there, merely stagnating, so it must be a good thing, right?

So, how do I reach my daily target? Well, I have an exercise bike I try to do rotations on most mornings which takes about 30 mins and equates to about 600 pushes. Then, when the weather is fine enough, I’ll go out for a push in the day…20 mins=approx 1,000 steps. On the school run, I try to get there 20 mins before the bell goes, so I can do laps of the playground before picking my daughter up from school. 10 laps=approx 800 pushes. Sometimes, after school, we take our dog to the park….1 lap is about 500 pushes. All the general bumbling about adds up pretty quickly too. I have a handbike which attaches to the front of my chair, turning my chair into a trike which works similarly to my indoor exercise bike, will report back on times & pushes at a later date. It’s not all about pushes either. Exercising with weights & wheelie dancing to my daughter’s latest pop trash all contribute too. Every little helps, and all that!

I guess you will all put me to shame with your able bod workout routines, but I am trying and it is helping! So, onwards & upwards, folk! 🙂

Tech, tech, tech!

Omg….who doesn’t love clever tech…..?!? The fantastic brains & R & D behind it all just blow my mind! It is SERIOUSLY beneficial to me & my independence. I love it. I also hate it! I mean it’s seriously clever & amazing and all that jazz. Apart from that if it is also useful to me, then I begin to rely on it and depending on the level and the common availability of the specific piece of kit, if/when it goes wrong, I can be pretty stuffed.

Take my last van, for example. I drove & mostly loved it for 12 years. It gave me the independence to roll into the driver’s position in my chair, drive to my destination and roll out again. I was freeee! Apart from the fact that all the hand controls/wiring etc were done pretty much single handedly by an adaptation specialist engineer, who lived in Leamington Spa, Midlands, and retired 5 years ago without, it seems, doing much of a handover to any of his colleagues. Seriously guys, I am just one of those people this could happen to! This meant for the last 5 years, every time something went wrong, we had to wing it to find a solution to keep me mobile and therefore ‘independent’. Never a questionable winging it, but a winging it nevertheless. 

My life is pretty much surrounded by tech…from my clever push assist wheels with the sparkly lights loved by kids small & large, to our automatic front door, our very clever ‘rise & fall’ kitchen counter which adjusts for a wheelchair user to cook and an ‘able bod’ and not forgetting my brand new shiny wheels. 🙂  All very helpful things, love them, until they go wrong.

Going back to my old van, I remember breaking down once on the roundabout right near our house and having to phone the RAC. I sat there for a while, waiting for some helpful saviour to turn up and when he finally did, he took one look at it, laughed out loud and said ‘is this some kinda wind up luv?’ Inspired. I also now recall an incident in 2005, just before Christmas, on a road trip from Bristol to North Wales, being stopped by some keen copper for speeding. At first he wanted to breathalyse me, but when I explained I couldn’t blow hard enough because my lungs were kind of paralysed, he wanted to know all about the van and how it all worked. Handy, some might say!

This blog post was inspired by my much loved birthday present. An apple watch. I have only had it since Sun and have already discovered it tracks my heartbeat, I can send text messages and make phone calls on it, I can PAY in shops with it (how futuristicly bizarre does THAT sound?!!)….it also tracks how many bloody wheel rotations I have done in a day. 1,901 pushes as we speak. It is a wholly useful piece of kit to me. Being able to pay with it alone, will really help me with my independence, as paralysed fingers make rooting around in a bag for my purse, a tricky business. What I don’t love but DO understand, is that they are mainly marketed towards posers and people who have them because it’s the latest gizmo. Not that I’m moaning…being trendy for once makes for a great side effect! 😉

Money and work

When health isn’t quite tip top and you have a constant disability or long term health condition to consider, unless you are lucky enough to have compensation or some sort of inheritance or you were able to work beforehand or you had married ‘wisely’, then money can be an issue. This is due to the fact that health CAN get in the way of the ability to work. It doesn’t have to. I know plenty of people with a disability who work. Some of them even full time. I take my hat off to them. It’s not that I can’t work, I do and have done throughout my disability but only in the first few years post accident did I find that working full time was a sustinable option. Since then, I have had to make a conscious decision to put my health (need) before work (want) or money (definite want). Tough decision. Especially at the age of 30, when it is only natural to still compare your own progress to that of your peers, all graduates, who (when sitting on the sidelines) always seem to have the most amazing careers. I admit to being resentful, especially of this, in my younger injury days. 

The more practical issue a lack of career presents, is the absence of any build up of money, a pot of savings, or any kind of pension which equates to an inability to buy very much, invest in anything and a lack of any future financial security, all because of an unwanted, severe injury, sustained at a young age. (As previously mentioned, I am writing about my own personal experience and cannot speak for disabled/those with a long term health issue at large.) In the early days, these things made me bitter, angry, stressed. This was not what my life was meant to have turned out like. Further down the line, fortunately my luck changed to some extent, I became a wife and then a Mummy and thanks to my husband’s ‘able bodiedness’ and career, we became homeowners. Even if the house stole every last penny so we could adapt it for a wheelchair, for the first time since childhood, I felt secure.

I still do dribs & drabs of work and am working towards a new goal, career wise. I am the family budgetter, the one who spots the changes in our bank account. Don’t get me wrong, I still splurge occasionally. But unless we win the lottery, I will always be careful now because having had no safety net in the past, a small safety net provides me with some peace of mind. 

Believe it or not, there are some advantages which can come from this situation, though you have to be prepared to look for them. I feel I appreciate things more, like a new dress or £100 saved at the end of the month.  Those are good things to enjoy. Free stuff and special offers are great for us all and you can find a lot of it, if you know where to look. Becoming more resourceful is a positive side effect, as is a ‘make do and mend’ attitude. These are valuable life skills.

What about you?  What’s your relationship with money like? I’d be very interested to hear your views. 🙂

Clothes shopping

Sometimes I don’t know what’s down to just being a bit older than I was and what’s disability related but clothes shopping is something I really have to be in the mood for these days. Also, I don’t really place much value on buying clothes like I used to & think that making memories & filling our family memory jar with theatre tickets, photos & small keepsakes is the important stuff we will remember when we’re old and where the money goes. Sounds smug, doesn’t it? Well, this is my theory…until I look in the mirror or compare myself, without even realising it, to a stranger about my age, walking down the street.

Society teaches us from toddlers, that beauty is a virtue. I have a 7 year old and I think this fact is magnified greater than ever today. The issue is that disability does not equate with beauty. By this, I don’t mean it is impossible to be beautiful AND disabled, rather that disability is not perceived to be a thing of beauty. I digress. 

Clothes are not cut to fit a full time wheelchair user who cannot stand up. Simple. Things don’t hang right as they are not cut for a (now) dwarf on wheels with a scoliosis, a tummy and a catheter….i.e. ME!!! Given this fact, trapsing round shop after shop is not a past time I relish, unless a strong desire gets hold. It’s hard to stay on trend with a tight budget and no way of trying things on in the shops. There ARE now shops which provide disabled cubicles for trying things on, some even have a bed in them. Glad they are aware of the rise of the purple pound. However, I can only ever really try on a top or two and that would involve an awful lot of faffing and about half an hour. So instead, I just try and opt for things I THINK I can probably get away with. This theory probably works about 50% of the time. The other 50% is spent returning items to the shop. 

Dresses/skirts have to be a certain length, as by sitting on clothing, about 4 inches is normally lost, so if I were to opt for anything ‘normal’, I would probably be arrested for public indecency! I have long legs and require a min 34″ leg (not easy to get hold of!) so I don’t look like a 3 year old wearing half mast hand me downs. Perhaps I should just feign the ‘cigar’ pant look but not convinced that would really work either!

Don’t get me wrong, I still like to look a minimum of reasonable. But there are days I would just prefer to sport a duvet or a bin bag instead. Who knows, I might even set a new trend!!! 😉

Weather

Here’s a thing. The UK weather in general hacks me off. I know many people feel the same way & many others, mainly men, I find, are completely indifferent to it & (I have only seen this most bizarre behaviour in Northern men) will wear long  shorts (above knee) in the deepest, darkest depths of winter. I just don’t get it on any level. 

I am a person who suffers from SAD. I have a light I bought in desparation on ebay several years ago, to try & help me cope a bit better in the long, cold, depressing grey winter months. I must remember to dig it out of what is lovingly known as ‘the cupboard of doom’ tomorrow, as for some reason, I have totally forgotten about it this winter!!! 

Being a wheelchair user presents many challenges, living in a cold, grey climate also does. Combine those two things and you are left with someone who doesn’t relegate their winter coat to the back of the cupboard until May & hauls it back out again by early October. My GP actually told me once that he reckons almost the whole population of the UK is vit D deficient, but that they only have the financial capacity to prescribe this most needed of vitamins to those with the highest need. So, on this note, if you don’t already do so, get online and order your vit D, quick! Cytoplan & Higher Nature are 2 naturopathic nutrition websites I would definitely recommend. 🙂 

I am definitely a lizard under an infra red light kind of a gal. I really despise the cold & I soooo envy those who are indifferent to it. Like my husband and almost every man I know. Pretty much all year round, I use a hairdryer at night to warm me up. It drives my significant other insane but it’s the only thing that works to warm me up, though I have to be careful I don’t burn myself.

Obviously, being in a chair means not being able to move around ‘normally’, so we get cold a lot quicker than the ‘average’ person. If you want to experiment with this, for those of you living in the UK, take a chair into the middle of your garden in January, only allowing yourself to move your arms, no leg movements, no wiggling your toes….no blankets, no patio heaters, no warmth inducing equipment. Just sit pretty still & see how long you last. Let me know if you actually try this and what it was like for you. 

I just thank God, I don’t live in Scandinavia, or parts of Russia or China. Great infrastructure in the former, maybe….but I think, as a chair user, I’d rather settle for somewhere like Thailand, where the infrastructure is pretty non existent but the people are super accommodating, the vitamin D is free and no need for a hairdryer anywhere in sight! 🙂

Coffee and cake

My daughter (7) and I have decided between us to have a Mummy/daughter date every other Thursday after school. It’s a way for us to spend some time together without interruptions or distraction and to swap stories about whatever’s going on at the time. Being a parent with a disability,  I often feel this is maybe even more important than normal, especially as she grows and realises parents in chairs are rather a rare breed. It’s not that I want to talk to her all the time about my injury but that I want to nurture our relationship, so she feels comfortable telling and asking me stuff when the need arises.

So off we toddle to the nearest Starbucks, as this was her location of choice. When I ask her why there, she says she ‘loves all the yummy cakes’. I didn’t think explaining issues of immorality on their part and why, instead, we should choose an independent café, was really necessary at this stage. Maybe when she’s 20, we’ll revisit it.

Bless her, she was so excited when I picked her up, it’s amazing how much they get from the little things and how much adults benefit vicariously from the little things they love. When she was smaller, around 3 or 4, I was still wary of taking her places totally alone, in case she decided to run off on me, thinking it was a huge joke, or hide somewhere upstairs once she realised, pretty early on, that I couldn’t leg it up those stairs, grab her and walk out with her under my arm. I have envied peoples’ ability to do this when needs must, in the past! So Thursday treat is quite a new phenomenon in our house. It is also 1 of the 2 days in the week where we aren’t rushing off to some after school activity straight from school and we quite often see friends on a Friday.

There is always an element of planning involved in where I feel comfortable to take her if it’s just the 2of us. I need to keep reminding myself that she is 7 now and actually pretty sensible but really busy roads and really crowded places are places I am really only happy to be around/in when we are with an adult who can quickly get from A to B if necessary. We are off to London for a few days next week, as it is half term. There’s so much to do, it’s great fun but I wouldn’t take her to the middle of London on my own, it’s just too full on. Then again, I wonder how many other Mothers feel like this, on 2 wheels or 2 feet?

Crowds and access.

Fab time was had by all at Manchester Chinese New Year on Sunday. We waited about half an hour to see the parade. When I say ‘see’, for about half the time what I saw was the displays on peoples’ iphones as they videoed what was happening. I only have myself to blame for this, as I was told by a few very ‘helpful’ (I have my own mind thank you very much) officials that I would be better off sitting in the cordened off, specially designated disabled section. I have always struggled with these ‘sections’. They are to be found everywhere where there are crowds of people….gigs, concerts, festivals, parades etc. They are very practical and make perfect sense. Except I do not want to ‘belong’ there. This is my insanity shooting me in my very own foot here, as I know full well that my own stubborn pig headedness means that if I sit amongst a crowd of people who are standing up, unless by some genius stroke of luck, all those who are infront of me are dwarves, then I’m  not going to see very much. BUT the stubborn, pig headed spirit in me says, I don’t want to belong in the group with the ‘disabled label’ in the corner. There. I said it. And now I feel like an evil witch. But my mind is still sane (well, evidently not, or I would have chosen to go and sit somewhere where I could see more than half of a show I had hung around in the big freeze to see!) and my spirit is still 5ft 11 (180cms) and can see over most people to enjoy the parade although in reality I have considerably shrunk and am now only 3ft 2 (96.5cms)!

As cities go, Manchester is pretty wheelie friendly and the people are normally pretty helpful if needed, too. But there are still loads of places I can’t go…..shops, restaurants etc, because of steps.  China town is a great example of this. Most places are in cellars or up a flight of stairs. Just not doable unless you are prepared to be carried either up or down stairs surrounded by an army of men and you want to make a grand entrance. In the early years of my injury, on a night out after copious amounts of booze, this worked wonders as a pulling tactic. I vaguely remember once ending up in a nightclub in a cellar in Tunisia, not a sober soul in sight, being carried down into the cellar and back up at the end of the night. God only knows how I managed to stay in my chair! Also, another time, attending the party of a friend in Paris, the only access to her appartment being a spiral staircase,  3 floors up and getting to know a very lovely transvestite,  dressed up to the nines, who helped me all the way up. Absolutely true story but I digress. God, I miss those days sometimes!

So, on Sunday, we visited China town and as you would expect, it was heaving. There were some street stalls which were fun and meant I also got to experience some of the goods they were selling. We hung around enough time for the kids to see the Chinese gate and to chuck some firecrackers.  A good day was had by all. 

The expense of disability-Part 2

In my last post, I started talking about how expensive it is to be disabled. Wouldn’t mind, but I don’t think anyone could call it a ‘lifestyle choice’, could they? Not like even the highest spec wheelchair would be the envy of all the neighbours, is it?! But alas, lifestyle choice or not, it is a seriously bloody expensive way to ‘be’. Last time I talked about my chair and my amazing wheels. Best. Wheels. Ever. Until one of them decides it’s had enough and just stops working. This can (and has!) happen at any time, anywhere. The first 6 months I had them, I literally couldn’t leave the house on my own because every now and again, they would just decide to pack up, leaving me completely stranded. If a bit of tweaking by said companion didn’t work, I would have to be wheeled back to my van to reach the safe haven which is home, as quickly as possible. Sooooo…what’s all that got to do with expense? Well, the only person who can fix these wheels is an ‘engineer wheel fixer’ (very important job title I just made up) in Aylesbury, Oxfordshire. So the process goes like this: I get on phone to engineer who is obviously never there, as is too busy fixing someone elses’s wheel, so a message is left. He then tries to get hold of me and although I am at home, stranded, I still somehow manage to miss his call. When we eventually speak, he talks me through all the minor things it could be (which we have already tried, in fact I think we should write an updated troubleshooting manual!) and we conclude with him having to DHL me another wheel. Ok when the wheels are under warranty, not cheap if warranty has run out. I think last time I had to ‘borrow a wheel’, the cost was in the hundreds to have mine fixed and DHL’d back to me. 

Then because literally nothing is straightforward, everything costs more, as it is ‘bespoke’. Even getting through the front door costs more. First thing needed is a ramp, we just had a quote for a new one….£2,000. Must shop around! Then you need an electric door opening thing fitted (high hundreds) plus some kind of electric fob so I just have to push a button to open the door, rather than try to fight with my hands to use a key, as my fingers are also paralysed. Another £100. So you’re looking at the best part of £3k just to get in and out the front door. Don’t want to bore you with an individually itemed bill, but think you get my drift!

The expense of disability

For those of you who don’t know and some of you who do, being disabled is an expensive business. Many of the people I know with spinal injury have financial compensation as they had someone else who they could hold accountable for their injury. The stats show that many people become injured in their 20s, as this is the most likely time for adventure and when people believe themselves to be invincible. There are all kinds of reasons people can ‘end up in a wheelchair’, but with accidents causing spinal injury, motorbikes, horse riding, road traffic accidents are amongst the most common factors. Often though, those who are injured in this way end up holding the manufacturer of the vehicle they were riding liable for their physical damage and end up with a compensation claim running into millions of pounds. I am sure most, if not all of these people would cheerfully swap these vast sums of money for an injury free life if this was possible but in the main, spinal injury is still irreversible, despite amazing scientific advances which can often be misleading in the media.

My injury was the result of being hit by a freak wave which knocked me over, hitting my head hard on a sandbank on the bottom of the Indian Ocean. I have vague recollections of this happening and remember it was literally a split second between being a fit, able bodied 23 year old and breaking my neck due to the impact of hitting my head, becoming paralysed for the rest of my life. Writing that even now, it is still hard to get my head around how quickly my whole life changed. I became paralysed immediately and so couldn’t get up from under the water and nearly drowned. I really thought it was game over and just prayed hard that someone had seen what had happened, which they did and my life was saved. I am forever grateful to these people. As a result of this though, I had no-one to sue and my injury was classed as ‘an Act of God’, meaning 0 financial compensation. 

The problem is, being a wheelchair user is expensive. The greater the extent of the disability, the more we rely on technology to provide us with maximum independence and flexibility in our lives. Until I became injured, independence was something I just took for granted. From big things to little things, like the ability to use my legs to ‘nip’ to the local shop to buy some milk, to the freedom to just get on a plane and get off the other side. Easy peasy. 

As an example, my current chair (which I love!), has a titanium frame (which my husband can pick up with his little finger, it is so light). The wheels have lithium ion batteries in them which assist me when I push. It is a brilliant feit of engineering and design and gives me maximum independence (I got this chair 2 years ago and for all the years I had been injured before then, this was the first time I could cross a road again on my own at the age of 39!) but the total cost is around £7,000. The equivalent of a decent car. We all need a cushion on our chairs to help prevent pressure sores. I have tried many out over the years and have only found one which really works. I have to order it online from America and they slap a hefty amount of import duty on it. This is something I need. Cost is approx £600. I need a new one every 2-3 years. Those 2 things are just for starters. Then there are beds and matresses to consider, shower chairs, vehicles and house adaptations. All crazy money which I will touch on in my next post. This was just to give you a taster.
Thanks for reading folks and remember, your comments are much appreciated!

A brief flavour of spinal injury

Thought it may be time to touch on how having a spinal injury affects my life. I say ‘my’, as there are many folk out there with a spinal injury but, as is life, we are all different. Helpful characteristics I have found in order to ‘succeed’ (only you can define that) are to be resourceful and think outside the box. By resourceful I mean both physically and emotionally so, when things go wrong for no apparent reason, a pressure sore here, a bad chest infection there, coping reserves are available to overcome what is happening and how you respond to that. I suppose I am not only talking about spinal injury but about ways to handle life in general when the going gets tough. 

There are many things which need to be ‘managed’ at all times, like making sure copious amounts of fluids are drunk every day without fail (around 2.5 litres) to avoid getting a nasty urine infection which could result in hospital admission; keeping properly warm in the winter by layering up to trap heat between garments and not staying out in the cold for too long (for me, around 2 hours tops when it’s really cold); trying not to spend time around people with a bad cough (especially for tetraplegics like me who can’t cough due to paralysed muscles) unless you want to increase your chances of a chest infection and possible pneumonia which can most definitely be fatal. Looking after your skin and I don’t mean in a facial routine kind of a way, but more looking out for red marks or broken skin which can very easily lead to pressure sores which can result in literally months of bed rest while a sore heals. All that’s just for starters…not an easy ride!

Then people need to be ‘dealt with’, most of whom are lovely, yet others wish no harm but just like to stick their noses in where they are not wanted. ‘So what happened to you then?’, is still something I hear strangers asking, 19 years down the line. Guess what peeps? It’s totally old news to us and if we want to share, we will, just as you may or may not choose to share private details with us. ‘Oh, aren’t you pretty, such a shame’, is also something I still get and yet am STILL never prepared for. Or a few times in Spain and once in Hong Kong, when just tootling about, minding my own business, various different people have thrown money in my lap, as they believe begging is the only way to survive as a wheelchair user. Or the time in India, when filming a trip about accessibility in Rajhistan, where I quickly became surrounded by about 40 adults and children, just standing there gawping at me because they perceive Westerners as rich and therefore free of imperfection, especially ‘disease’ or ‘illness.’ Or another time in Hong Kong, when the hotel receptionist made me give my travellers cheques to my friend to give to him, in case by accidentally touching my hand with his, he could ‘get it’. In case you were wondering, there have also been many trips where none of this madness happened and it was all relatively plain sailing, but being prepared for this and more, can be key.