Friday, 29 December 2017

What do you see?

I've just seen a post on Facebook that got me thinking. There was a picture of a lady in a wheelchair on a beach (in the USA, I think) and she looked rather sad. She had written, "I wish people would see me and not the wheelchair." My first thought was to agree with her. I get what she means. She just wants to be like everyone else and for people to treat her like they treat other people. I read a lot of posts like this from across The Pond and I wonder whether it's somewhat more difficult there than it is here.

My second thought was about how she got onto that beach. It was soft sand. I remember trying to get onto the beach in Kemi last summer. I was determined to get onto the beach and paddle in the sea... more so because Neil is reluctant to even try to help me because it's so impossible. With a lot of help from my friends, I made it onto Kemi beach and then walked on crutches and paddled in the sea. It took so long to get over the sand that I was exhausted by the time I reached the sea! So I wonder how the sad-faced lady got onto the beach and why she was there. Wouldn't it have been easier if people had considered her wheelchair... my wheelchair... wheels in general? Wouldn't it be great if there was some way of getting onto the beach in a chair?

Is the problem that people do see the chair and assume that the person wouldn't want to go on the beach OR is it that they don't see the chair and therefore don't make adjustments? Okay, so most beaches aren't designed by anyone. Nobody is responsible for making a beach... but lets transfer this question to other places. My family are going out for dinner at the weekend and the restaurant is not completely accessible. I rang to find out about it but was left with uncertainty, as they talked about manhandling me down an internal step. Are they seeing the person and not the chair? Are they not seeing the obstacles that are in my way? OR are they seeing the chair and not the person? Are they just not getting that normal people don't like strangers manhandling them and in that chair is a person?

Recently, on the news, there was something about accessibility in towns and how businesses are missing out on huge amounts of business by not being accessible. They might think that all disabled people are poor... because obviously we don't work! Well I do work. Sometimes I work very happily and feel immensely grateful that I have a job. Other days, I work through pain, fatigue and feel immensely stressed and wish I didn't have to go to work. The money that I earn, like most working people, is hard-earned. Therefore I am becoming more and more reluctant to spend it in places that are inaccessible. Why would I do that?!?!? There are great places that have gone to a lot of trouble and expense to be accessible. I'd like to spend my money there.

So do I want people to see me or my chair? Well, I think I want them to see both... together. I'm not saying that my disability defines me but it is a part of who I am. I don't want to spend my life feeling sad about that or frustrated because life is built around the majority. If people happen to see my chair first, well, okay... they're going to meet me next. Once they get to know me, the chair will fade into the background. In reality though, people don't see me or my chair... they see Liggy first. We proved that yesterday, walking round Ikea and Meadowhall. A few children pointed at my flashing front casters but lots of people commented on my beautiful dog and how well-trained she is. Then I just feel so proud to be wheeling alongside her!

Friday, 22 December 2017

Advent and some thoughts on waiting

It's almost Christmas! For some, the excitement is probably too much to bear, as the number of sleeps gradually decreases and that special day gets nearer. For others, Christmas isn't that big a deal or might have sad memories or reasons why we don't feel like celebrating. I'll be honest - it's not my favourite festival. I have a multitude of reasons why Christmas is associated with stress rather than joy but let's not go there.

Advent is about waiting... waiting for morning to open another door on the calendar and be allowed to eat chocolate at breakfast time... waiting for the arrival of the baby Jesus... waiting for a saviour... waiting...waiting...waiting. I do feel a little guilty, as a Christian, that I don't find Christmas more exciting. I've never been the greatest fan of waiting either. God does seem to like to keep us waiting.

This year, has seen the end of various seasons of waiting for me. In September, I completed my final paper of my MA and had an impatient wait for the final results, which signalled the end of my studies. Now I'm waiting for my certificate and then I'll be waiting for the graduation ceremony.

Also in September, I got the wonderful news that my wait for an assistance dog was over and now my beautiful Liggy and I are learning how to work together and develop a bond that will ensure a decade or so of a much-longed-for partnership. Ironically, in continuing her training, one word seems to dominate... WAIT!

We are a good match and mirror each other in so many ways. We both love our food, especially treats, but have allergies that mean we have to be careful about what we consume. We both need our sleep or we become grumpy. We both need fresh air and exercise or we become lethargic and lose our sparkle. And, neither of us likes to wait! Of course, we do it... but only because we have to.

I'm still waiting for some things. We've been waiting for ages to get the building work done so that the house is fully accessible for me, though the garden was a welcome measure to tide me over whilst waiting. The day the builders actually show up, I'm sure choirs of angels will sing joyfully. I certainly will!

If, like me, you don't like waiting, well at least the wait for Christmas is nearly done. If you waiting for other things, especially the big stuff of life, I wish you all the peace, patience and joy that is possible... and maybe some that goes beyond the possible. Merry Christmas and happy new year!

Saturday, 18 November 2017

CP Liggy is home

Yesterday was a really mixed day. Having spent almost two weeks at the Canine Partners' Midland training centre, with Liggy, her trainer and two other new partnerships, yesterday was going home day - so exciting! However, it also meant saying goodbye to some new friends... friends that have journeyed through the last two weeks together, supporting, chatting, joking and living together. Although I was glad to be returning home, I was so sad to say goodbye to them.

I want to tell you about the training but first of all, I should post a couple of pics of my new Canine Partner to melt your heart and send any doggy lovers all mushy.

Liggy lying next to me in the cafe, wearing her CP jacket.Liggy practising her new 'cuddle' command

Training

It seems a lifetime ago that I arrived, a little nervous, to begin the two week onsite training course. So much has happened since then, and I've been on a rollercoaster journey, very similar to that of bringing home a new born baby. One minute, things are going really well and falling into place, and I think, "That's it! I've cracked this dog-training thing. I'm an expert!" The next minute, something goes wrong and I think, "I'm going to be the only person in the world, who can't learn how to take care of a labrador puppy."

We started with really easy things like basic obedience work. Well, I say 'easy' and 'basic'. It was quite easy, once I'd programmed my brain to remember the right commands. For a dog, a command word means one thing and only one thing. So, for example, 'down' means lie on the floor and look very cute. When she jumps up and you want her not to, 'down' (the first word that comes to mind) means nothing. It's 'off'. And as someone who frequently says, ' I'd better go now...' I really have to remember that 'better go now' is the command to pee or poo, and Liggy pretty much pees and poos on that command within seconds of hearing it. Don't worry, I haven't said it at the wrong time yet but it's only a matter of time.

We did lots of outings to practise walking nicely and to practise where to stand, sit or lie in various situations. She perfected the art of browsing through Christmas jumpers in Boyes, a task neither of us will ever need to repeat. She also did a fab job of lying parallel to my wheelchair, whilst I had a coffee and cinnamon roll in a cafe. This was one of my favourite sessions!

Liggy has learned to do various tasks already that will help me out. The most useful is that she will instantly pick up virtually anything I drop. She has picked up keys, pens, her lead, my phone, the TV remote control. Initially, I was dropping items on purpose for her to practise but now she's doing it for real and that is just the best feeling ever. I can't describe that sinking feeling I used to get, when I dropped my keys or pen. Bending down, whilst just about doable, is so painful and difficult. Now, I almost like dropping things, just to see her response. If she could talk, I imagine her saying, "It's alright mum. I'll get it for you. You just sit tight. Here you go mum. I did it! Treat???"

The other thing that I love is her specially-for-me 'cuddle'. She has been trained to cuddle my left leg (yes, she knows her left and right) by putting her paws over so that her armpits are right next to my knee (which often feels cold, even when the rest of me is warm). Then she stays there for ages, while I feed her treats and tickle behind her ears. We both really enjoy it!

Home

Okay, so I know that this will be Liggy's last relocation experience. She's gone from breeder to puppy parents, to onsite training with weekend foster parents and now she has arrived in her new forever home... but she doesn't know that. Moving house is stressful for us and we can talk and understand what's happening. Liggy hasn't got a clue what is going on. She just has to trust me to take care of her needs and her biggest need this weekend is to get used to her new home and know that all the normal stuff still applies.

I suppose, like all living things, the two most basic needs of a dog are food and water going in at one end, and pee and poo coming out of the other. Toileting and feeding are very routine things that I need to keep as routine as possible. I was a little nervous (in the light of some comments by Neil's aunty) that Liggy might not use her dog toilet as readily as I hoped. However, it was the first thing she did on arriving here. We went straight out in the garden, went to her toilet and she peed on my first command. She has kept to her normal routine of going at her usual times. Later this morning, I'll go out and try out my new long-handled poop-scoop. I'm less sure of it's ability to perform than Liggy's.

Feeding is the thing that most amazes me. Liggy is still very puppy-like. She's an obedient dog but absolutely loves food more than anything in the world (girl after my own heart). As soon as she sees me get her bowl out, she goes and lies on her bed. She waits patiently while I prepare it and then waits for two toots on the whistle. Then (for Harry Potter fans) she apparates from her bed to the bowl and vacuums it up.  When she has finished, she brings me her bowl so I can put it in the sink. Eventually, I hope to cut out the middle man and she'll put in the sink herself. Sadly, I don't think we'll get as far as doing the washing up though.

Morning

One final thing that I love more than anything. I have spent years in an all-male, night-owl, grumpy-morning-people home. Liggy loves morning! We may need to work on an acceptable weekend wake-up time but it's like going back to the days of enthusiastic toddlers. If I show any signs of waking up, she's straight in there, wagging her tail for all she's worth, parading back and forth carrying her favourite teddy and generally doing her morning dance. I'm sure she's trying to say, "Hooray! It's morning! A new day, mum! Quick! Wake up! I'm ready to pick things up, do nice walking and cuddle your leg. Come on mum! Let's do the dance!" (Evan Almighty reference there.) So I do... I get up and do the dance... okay, maybe not.

Sunday, 15 October 2017

Getting ready

I'm a little limited in what I can post at the moment but I have now been matched with a Canine Partner, subject to her passing her advanced training. Until this has been confirmed and her puppy parents notified, I can't post her picture or name. So let's focus on a different aspect...

Dog food

Neil and I went for an exploratory visit to Pets at Home this afternoon to check out food, treats, toys, beds, poop scoops, etc. It was all very exciting! I had never realised how many different types of dog food there are. We know that all Canine Partners eat dry food, so that narrows it down a little but there's different foods for puppies, adults, mature dogs and overweight dogs.

So, there's the doggy equivalent of Weight Watchers...

Weight Watchers dog food

Regular food for adults but who have expensive taste...

Adult smoked salmon dog food

And the senior citizens' daily special...

Dog food for senior citizens

Obviously, we don't need to buy food yet but I had to buy something to make it all feel real. It's a bit like buying baby stuff when you first find out you're pregnant. So...

Toys

When I went for my matching visit, I rediscovered something that I have always known but recently forgot... I throw like a girl! Yes, I know, it's embarrassing, but I can't throw a ball in anything like an acceptable manner. Hence, the first toy I think we must have is a ball lobber. This is closely followed by a frisbee.

A pink ball lobber and a purple frisbee

Treats

We soon discovered that food and toys are reasonably priced. Treats though!?!?!? Oh my word! Well pricey! I shall be heading online to find some kind of bulk buy. Meanwhile, I've got a treat bag to keep them in. I found some of the ones I used on the assessment and matching days quite difficult to get my hand in but this sort was quite easy and clips on your trouser waistband.

Treat bag


So, here's hoping and praying that the little doggy will work hard at Big School (the colloquial name for advanced training) and that we'll be spending the first two weeks of November learning how to work together.

Sunday, 8 October 2017

Parkrun

As many of you know, I've spent the last four years studying and every Saturday has been a study day for me since we moved back from Finland. For quite a while now, I've been aware that while my head was buried in articles about technology-enhanced learning, our local park was full of healthy, smiling, friendly people doing the weekly Parkrun. So I decided that once the study was over, I would give it a go. Afterall, 5K is just the right distance for me when I want proper exercise but without inducing coronary overload.

So last week, I contacted the local Parkrun and asked whether wheelchairs were allowed. They are but the route is almost entirely on grass. Not to be deterred, I started checking out other runs nearby and I found one that's on paved paths. Obviously I can't share which one, as this is the big WWW and anyone could be reading it!

Anyway, I went yesterday morning and found the people I had been in contact with during the week and they were really nice and friendly. I was surprised how many other nutters were up and out first thing on a Saturday morning. I later found out there were just over 500!

I was quite nervous, not knowing the route but I joined the other newbies and they told us all where to run and what to watch out for. It felt like forever, waiting on the start line... or actually quite a long way back from the start line because I anticipated being slower than all the elite athletes... quite a bit slower.

Once we started, there was that weird thing where you can't move for a while and get up any speed because of all the other people running but that soon dissipated and I enjoyed my first lap around the lake. It was the perfect day for me - cloudy and cool but dry. I had decided to keep my hoodie on so I didn't get cold but after half a lap, I regretted that. Next time, it's t-shirt only! I was way too hot! Fortunately I had a bottle of water with me but I'm going to have to rethink that too. How do you drink from a bottle whilst using both hands to propel? I need one of those thingies that you put on your back and suck through a tube.

Picture of the finish line

On my second lap, I passed what would be the finish line (see pic) and wondered whether anyone would notice if I skipped a lap and went in. Ha ha! I think they might. Being the only wheelchair kinda makes you noticeable. Also, I hate cheats! So I kept going. It was also on the second lap that I realised I'd got a nasty blister on each index finger. I'll have to wear full fingered gloves next time.

By the final 300m, I was getting properly tired and looking forward to finishing. As you can see from the picture, the finish line is on grass. It was quite hard and compacted though and I could easily manage to cross it. I just couldn't have managed the whole race on grass. I finished in just under 37 mins so I was towards the end of the pack but I was really pleased that I completed the course and still had enough energy to get to the cafe and refuel.

Me shaking hands with some of the other runners and organisers

This morning, my shoulders feel like lead, much like they do after our long treks round the seafront. I'm really looking forward to next time though. My car's going for a service next Saturday, so I hadn't expected to go but Neil has offered to swap cars, so I might be able to make it after all.

Thursday, 28 September 2017

Potential Match

I keep reminding myself that the email ends with:

Please note at this stage this is a chance for you to work with the potential dog so that we can assess if she is suitable, she is not definitely the dog for you. Matching visits are not always successful and the trainer ultimately has the final decision as to whether the match is to go ahead. If this match is not successful you will go back onto the waiting list at your current position until we find another potential dog.

...but it's really hard not to get excited!

On Tuesday afternoon, I got the call that I've been waiting for since forever. Well, okay, it's only been about 2 or 3 years but it feels like forever. The lady started off, just asking me about my work circumstances and whether anything significant has changed. Then she told me she's been training a black labrador puppy and she thinks it may be the dog for me.

I'm going next week to meet this potential assistance dog. I'll spend three hours or so working with her to find out whether we are going to be a good match or not. If it's a match, then I'll be booked onto a 2 week training course and could be home with my dog before the end of November.

I can't even describe what this feels like. I dropped my pen at work yesterday and it went under my desk. Normally I get frustrated because I have to ask someone to help me but I just smiled because there's a light at the end of the tunnel and even if this isn't a match, I'm at the top of the list now, so something will happen soon.

Monday, 18 September 2017

When did it hit you?

... and how did you deal with it?

I don't know how I missed it but I ended up becoming aware of a BBC programme, Without Limits: Vietnam, and I was watching it on iPlayer. I can't remember which of the people it was but one was saying that when they first became disabled, they were fine about it but then, later, it hit them and they got really down about it. I was talking to somebody at the weekend, who had a family member with a similar story. In fact, it's not the first time I have heard this... and my own experience echoes that of so many others.

I'm not even sure that it was just my disability that hit me and made me feel down. I think it was the whole package... losing mobility, leaving Finland, stopping teaching... all combined with the normal highs and lows of everyday life and work. It kind of left me wondering who I am and whether I have anything left to give. I have to confess, I was getting a bit worried about my mental health.

Not being one to just brush things under the carpet, I gave this some serious thought. After all, it's bad enough losing mobility. I can't afford to lose the plot as well! I came to the conclusion, after a fair while of thinking about it, that I'm not losing the plot and that anyone who has life-changing health issues is, at some point, going to need to stop and process it all. So I did just that... gave myself some space to process it all. And I came to a few helpful conclusions:

1. Control

I can cope with losing almost anything but not having any control over what happens is the hardest thing. Call me a control-freak but I need to remain at least partially in control of what is going on. That might be why I adjusted to the wheelchair better than how I adjusted to daily physio. The physio was thrust upon me, whereas using a wheelchair is my choice. It gives me control over my daily activities. A lot of things have happened that I have had little control over. That's fine but sometimes, I need to take control back. So when things are out of control, I need to find something that I can control, even if that is only my attitude and response to it.

2. Independence (or lack of it)

In general, people are very helpful. Don't get me wrong, we all know there are some horrible people out there, but the vast majority are nice and want to help others. That's great because we all need a little help from time to time. It's really difficult though when, suddenly, you need help with things that you have always been able to do... things that you would have helped others with. I'm quite independent and don't like people doing stuff for me that I can do for myself. So it's immensely difficult having to accept help with the simplest of tasks.

When people offer help, some people are doing just that - offering help. However, some people seem to need to help, as though it is their own need they are meeting, rather than the other person's. So if you politely turn down their offer of help, it's taken as a rejection of their entire being. Also, people assume that they know what help is needed, which is actually quite strange if they've never been in my position. How would they know? I think it's partly that they feel helpless. They can't make everything better so they try to compensate.

Conclusion: Sometimes, accepting help is not about my weakness but about helping someone else not to feel helpless. It's a balancing act.

3. Exercise and the great outdoors

I've never ever realised it before, but I need a lot of exercise and I need a lot of fresh air. If I stay indoors and do the couch potato thing, I quickly start to feel quite rubbish. Last winter, I got out a lot, went on lots of walks and it felt good. As soon as summer comes though, I don't like being out so much. I prefer to go out in the evening, when all the wasps have gone to bed but then it's dark and I don't like going out alone after dark either.

Recently, I have started working a compressed fortnight. That means I work 10 days worth of hours in 9 days and then get an extra day off, which for me is every other Friday. So I decided to make that my exercise/fresh air catch-up day. Last week, I went swimming. I drove miles to one of the big Olympic pools, with nice cold water and I swam for almost an hour. Then I went shopping, which means lots of wheeling myself around. Of course, I could do this on an evening or Saturday but doing it midweek means doing it on my own, which I think will also help me regain some sense of independence.

So, I'm hoping that by keeping these things in mind, I'll get through this phase of adjustment with my sanity intact.

Saturday, 19 August 2017

Spending summer outside

I can't remember the last time I spent so much of the summer in the garden. There's a lot about summer that I just don't like: the heat, the sun, the wasps, even bees (sorry), nettles, too much greenery that might be hiding wasps, bees or nettles... The list is endless! However, contrary to what my family think, I do like being outdoors. I just don't like feeling stressed.

This summer has been different. Around Christmas time we started digging up this...

Our garden before work commenced. Basically all lawn.

... and turning it gradually into this...

Our garden with most of the work done

The obvious advantages are:
  • it looks much nicer
  • it's wheelchair friendly
  • there are raised beds for my veggies
  • there are 'safe' places for me to sit.
So throughout the summer, I've spent a lot of time (evenings and weekends) outside, enjoying my garden. We've enjoyed an abundance of courgettes, lettuce, peas, beans and herbs. In the last couple of weeks, we've started planting things for winter harvest - some potatoes, cabbages, little gems and so on. 

I'm now in the last five weeks of my Master's and I'm on with my final written piece - the End of Module Assignment (EMA). I need to do a lot of reading for that and I'm enjoying being able to sit in my netted swing seat with my tablet, reading happily, safe from all flying monsters.



This has been an excellent example of the social model of disability. That means that our impairments don't disable us but rather society and the way things are built. Whether we're talking about physical mobility or phobias of summer monsters, it's all the same. If our environment is right, we can function just fine. 

I'll leave you with some pictures of our veggies...




Monday, 10 July 2017

Travelling alone - reflections

I can't believe I've been back a week already. It only seems like yesterday that, in a moment of madness, I booked a week away in Finland. Before my holiday, I was really tired... exhausted... physically, mentally, emotionally, spiritually. It felt like I was waking up, going to work, coming home and going to sleep. I needed a rest.

I did wonder if I was making a big mistake, heading back to Finland whilst I was feeling so low but it turned out to be just what I needed.

Pulla - a Finnish sweetbreadThe Positives

Right from day one, in Helsinki, before flying north, my friend whisked me out for a long walk. I was a little nervous, as it was a warm day... sunny... without Neil... wasps??? Actually, I didn't see a single wasp ALL week! Consequently, I got tons of exercise. I propelled myself miles! I sat outside coffee shops drinking lots of coffee and eating pulla. It was also really good to sit and chat with friends that I feel like I've known for ages... people who know me really well.

Apart from the night each end in Helsinki, I stayed in a hotel. Being completely alone allowed me some time to get spiritual refreshment. Tempting as it was to go out and spend my whole week seeing people, I decided before I went that I needed some time to pray and seek God. I know some of my friends and family won't get that but for me, it's really important and it makes a difference.


The Not-So-Positives

The biggest downer happened on Thursday morning. I had planned a great day out in Oulu, visiting old friends there. I was all on track until I started getting strange flashes in the corner of my eye. My heart sank, as I realised what it was. Within minutes, I had full-scale visual dramatics going on and the mother of all migraines hit. Fortunately, two of the friends I was meeting decided to brighten my day and drive north to see me instead. By late afternoon when they arrived, I was feeling much better and we went out for dinner.

That leads me onto the second negative. The only wheelchair accessible eateries in town were Hesburger and Pizza Rosso. The latter was lovely but took us forever to find. Everywhere else had steps, narrow doors, no toilets, etc. This became a bit of a theme for the week. In Neil's absence, it was much more obvious how difficult it would be to live independently there... impossible, in fact. Even the main supermarkets didn't have wheelchair trolleys. Dropped curbs were totally hit and miss. Mostly the infrastructure for accessibility just isn't there.

The photos show two touristy places, a museum/art gallery and a Santa's grotto type place. Both have steps to get in and I didn't find an alternative entrance.

In a way, this kind of bothered me, but in another way, it was helpful. It made me feel like I'm in the best place, here in England. Much as I miss many aspects of living in Finland, I wouldn't trade my independence for anything! So then, it began to feel more like a proper holiday, rather than a visit home. So, at long last, coming home actually felt like coming home.


Blending it all together

I wanted to get to a place of feeling a proper connection with home, whilst not losing a different kind of connection with Finland. I think my week away was really good for beginning that process. I certainly came back, looking forward to being back at work and feeling like I'm in a good place. I guess I can't ask for much more than that.

Some other nice pics of the week

I think this is a war memorial
Kemi's answer to Stonehenge?

View over the sea from a little footbridge
Walk round the nature reserve

Pink Cathedral-style church
Kemi's Pink Church

Looking down one of the main streets, through the trees
The town - clean, light and wide


Saturday, 8 July 2017

Personal Learning Environments

I'm still ploughing on through my studies. This week, one of the themes has been Personal Learning Environments (PLEs), as opposed to institutionally provided systems such as Moodle. One of the tasks led to me mapping out my own PLE. Thought it would be interesting to share it. You can click on it to see a bigger, full screen version.

Popplet showing the different places I learn online
My Personal Learning Environment

Monday, 26 June 2017

Travelling Alone

I guess travelling is one of the things that most disabled people worry about, to some degree. For the most part, I travel with my husband and/or my sons and we tend to drive everywhere within the UK. This week though, I'm traveling abroad on my own, which can be quite challenging. To make it even more interesting, I only planned this trip 3 days ago.

Today's section of the journey began with Neil driving me to the airport. That reduces the capacity for things to go wrong before I even start. So he left me, checked in, at Airport Assistance. It seemed unusually quiet there and there was an overkill of staff but I later discovered they were all new and only one was allowed to actually assist. He took me through security. Well, actually, he accompanied me through security. I hate being pushed and left my handles in the car. Ooops! Shame!

Security was largely uneventful, except for a very patronising 'pat-down lady' who clearly assumed my tremor indicated either guilt or fear. Then three male security chaps decided to investigate the contents of my 'toilet kit', pulling out a range of pads, nappies and catheters in public. It's a good job I've already waved goodbye to my dignity!

I opted to take care of myself from security to the gate. Warning - only do that if you know you can propel far enough. It's often a fair trek from all the shops to the gates. Anyway, at the gate, a lovely Oriental assistant, about 4 foot nothing and 4 stone offered to carry me to my seat. I was so tempted to let him try but I whipped out my stick and asked him to carry my bag instead.

I'm not good without regular meals. We had a lovely pork salad for lunch at home so I went into Boots in departures and bought a meal deal. It's cheaper to do that than buy onboard food. Plus, if you can't find anything suitable, there's still other options.

I find the flight quite easy. The height and width of the cabin mean there's always something to hold onto. There are handles in the loo, which is better than many other places. I use my wheelchair cushion to sit on, making it more comfortable and the airlines always have extra little pillows, so I put one in the small of my back.

I'm actually writing this in the air, somewhere over Denmark, I think. I find landing the worst bit of the flight. I nearly always lose sensation in my legs and bumpy landings hurt my back. It doesn't always help but 'zipping and tucking' Pilates-style, tensing my core muscles usually provides some protection for my spine.

Then there will be the long wait to disembark. I'm always first on, last off. By then though, they should have retrieved my wheelchair and I can tootle off to baggage reclaim, where the assistance guys will do all the hard work for me.

This time, a friend is collecting me from the airport. I just hope my chair will fit in her car. I didn't think to check that. Oops!

Sunday, 18 June 2017

It goes in waves

I haven't posted for a while. I haven't blogged or even updated my Facebook status, beyond sharing a few photos. It's easy to post stuff when things are going well but the last few weeks and months have been pretty tough. Some of it has been physical - getting hurt doing simple tasks, taking longer than I would like to recover. A lot of it is emotional and sometimes it's not easy to know what to do with that.

I was talking to someone this week, who reminded me that adjusting to a disability is like a bereavement. He's right, of course, but it's five years now. Surely I should have got it all together and be fine. Neil and I have both been bereaved in the past year and a bit and after the initial grief, there have been moments - like waves - of new grief. Anniversaries, memories, or just realising that you want to tell them something. Well, it's true. Adjusting to disability is like that too.

There's a part of me that doesn't want to share how I feel at the moment. It's not positive or inspiring. It isn't strong or courageous. However, if one day, someone is going through the same and they read this, at least they'll know they are not alone.

Mary, Mary, quite contrary

Don't you just hate contrary people? I do! They want different things from one day to the next. You can't please them. They're fickle and changeable. So it's even worse when I feel contrary. I want people to treat me completely normal... but then if they don't take account of my disability, I feel angry. I want to be independent... but if they don't help me, I feel abandoned. I want my family and friends to keep me challenged... but I haven't got the emotional strength to even try at the moment. I don't like being touched by people I don't know very well... but I really just want a hug. I want to work... but I'm tired.

At the moment, I have a lot a questions and a lot less answers. There's a mismatch between what I want and what I need. I feel angry with others but even more angry with myself and I don't even really know what I'm angry about. It just makes me want to withdraw from everyone and everything and hide away forever.

Too many changes

A couple of weeks ago, someone at work implied that I should know about all new developments in all areas across my patch. Sounds reasonable, I guess. The person who thought this has lived their entire life in the same town in the same patch. It really annoyed me though. Of course, he's not to know that we've moved house 4 or 5 times in the space of 4 years, including an international relocation and that I've done that at the same time as adjusting to my new physical condition. New home, new country, new body, new job, new church, new people, new... new... new. He isn't to know how much I miss having full health and strength, how much I miss living in Finland, how much I miss being a teacher, how much I miss going somewhere local without needing a satnav, how much I miss being my old self!

Expectations

I have high expectations of myself and others. Other have high expectations of me. That's fine. In fact, it's good, most of the time. I don't know myself though, whether, at those times when a new wave of grief overwhelms me, I want the expectations to be lowered a bit or not. I remember once, walking in the sea with my mum. I think we were in France, on the Atlantic coastline. I was about eight. A huge wave came and knocked us both over and pulled us under the sea. We lost grip and I remember swirling under the water, with my eyes open, watching debris and sand and thinking I wouldn't survive. I wasn't frightened. It didn't hurt. It was just a really strange feeling. That's how I feel right now. Just strange and not myself. I might get washed out to sea and never be seen again but I'm a good swimmer and it's more likely that I'll find solid ground again and walk away unscathed, wondering what on earth just happened.

Monday, 1 May 2017

Hauskaa vapua kaikille!

I love the way Facebook now shows us memories of what we were doing on this day in previous years. I enjoy scrolling through my old posts to remember what we were up to. Today is May Day in the UK. We always celebrate it on the first Monday of the month. In Finland, it's called Vappu and it's always celebrated on 1st May, regardless of what day it is. So my title today has been my status almost every year since 2009. It means 'Happy May Day everyone!" But here's what we've done on Vappu:

2009 - The boys were quite young. We cycled into Oulu and had a picnic in Ainola Park. The snow had melted.
 I can't remember where in the day this fitted but we had a party at church and played lots of silly games and generally had a lot of fun.
 Cycling over a big bridge into the city. Cycling in Oulu was really enjoyable most of the time, especially in Spring.
All our bikes, lined up in the park while we sprawled out on the grass. The river in the background had already thawed and the fountains were on. The park was full of people, all enjoying the day.










2010 - We were just starting to build our house and the foundations had just been laid. We were covering the foundations with 'egg box' to stop water from getting in.



2011 - We were in the middle of building our house and we spent the day hanging the sauna door. It was made of thick glass and was so heavy!

2012 - I was in bed, completely paralysed and in a lot of pain. I didn't know it at the time but I had cauda equina syndrome and I should have called 112 and gone to hospital.

2013 - I was travelling back to Finland, having been in the UK for a job interview for a headship of a school. At that time, our whole focus was on getting ready to move back here. It was the first of several interview trips.

2014 - I had an interview for a job with East Riding Council, something to do with data. I'm kinda glad I didn't get it because then I wouldn't have got my current job, which I really enjoy.

2015 - Absolutely no idea. I was probably at work - just a normal day.

2016 - We were on a cruise to the Norwegian Fjords. It was the first sea day and we spent it swimming in the pool before having a lovely meal.



So what about 2017? Well, Neil will stay at home and work on the garden. We've had it completely relandscaped to make it wheelchair accessible. It's lovely to sit out and potter. Meanwhile, today, I'm taking Josh shopping. It's not often I get the chance for a mum and son day but he needs some new clothes and then we're going to get his 21st birthday present (almost a year late) - a new piano.


What I love about taking a day and remembering the years gone by, is that it reminds me we don't know what life is going to throw at us next. One year, we were in the midst of building a new life. Just a year later, our lives were turned upside down. So many people thought that I had stayed positive in spite of what happened but the truth is, I considered suicide on an almost daily basis. I was terrified that we couldn't survive it. Pain, exhaustion and fear were immense for a while. But then only a short time later, we have built a new normal. I never expected to be happy again. I never thought I'd find pleasure in something as simple as being accepted but last night, Josh went snowboarding while I skied. He could have raced off on his own but we did it together. Today, we'll go round shopping centres, me in a wheelchair and him walking, and he's not embarrassed to be seen with me. It's all okay. I'm happy.

One of my favourite Bible verses is this: "And we know that in all things God works for the good of those who love him, who have been called according to his purpose." (Romans 8: 28) Bad stuff happens but God can bring something good out of it. That gives me such hope and confidence to face the future.

Saturday, 8 April 2017

How do you find the time?

I'm currently in the middle of my final module towards my Master of Arts in Online and Distance Education (MAODE) with the Open University. This week, we have been thinking about blogs and blogging as a learning tool and we have been allocated some activity time to write a blog entry. We were given some suggestions, one of which related to how we find time for study amongst our other daily life stuff. This reminded me of a question which my line manager at work often asks: How do you find the time to do that?

Some people just thrive on being busy. Maybe I'm one of them. I work full time, though not nearly as fuller-time as I did when teaching. I have a family, though now grown-up. I have an active exercise schedule, which keeps my body functioning as well as possible and also keeps me sane. So yeah, life can be pretty busy.

In my work life and on social media, I come into contact with many disabled people or people with long term health conditions. Two of the key issues that get raised, particularly in relation to their ability (or not) to work or study, are pain and fatigue. I get that. Since my injury, I have suffered from a lot of pain and a fair bit of fatigue. The thing with both of these is that they are different for every individual. What works for me might or might not work for someone else. What makes my condition worse might make another person's condition better. So this is just what works for me...

Pain

I get a lot of lower back pain. I'm not really sure whether it's muscle or something else. It's not nerve pain. It's very specific. It feels like my two lowest vertebrae have stuck together and then sometimes pulled apart. It's entirely possible that this is exactly what it is. The consultant said that would happen. He also said that daily physio would help keep the pain under control... and it does. In fact, the more exercise I do, the better the pain is. I need to do lots of different types of exercise, involving different parts of my body.

Studying (and sometimes working) can get in the way of this. The answer is that I have to be really self-disciplined. Even though I could easily get into study and be utterly absorbed for hours, I have to take regular breaks and move around or do some exercise. It's the same at work. And funnily enough, my fitness tracker has just buzzed to tell me to get up and move. (See you soon)

I also get nerve pain in my legs. I'll be honest, nothing helps this, except screaming and wriggling around until it goes. It's rather like having needles or nails or a knife stuck in me. The only consolation is that I know (in my head) it's not real. There is nothing there. The nerves are damaged and have a mind of their own.

Fatigue

I find fatigue comes and goes. Some days are fine; others are dreadful. I haven't fully worked out what makes the difference but certainly my mental state contributes. If I feel purposeful, needed, active, as though I'm living a normal life, then my fatigue levels improve. If I feel down, bored, overwhelmed with pain or any other negative emotion, then my body switches off and I go to sleep. Sometimes the sleep helps, sometimes not.

So for me, studying actually helps my fatigue levels. It gives me a sense of purpose, achievement and self-esteem. It makes me feel good. That's what keeps me motivated to do it. After work, I'm usually too tired to study but I get up early on Saturdays and try to crack through as much as possible. Then, midweek, I just keep up with the forums as best I can.

Does something else have to give? Not really. When I go on holiday, I take my studies with me - either my tablet or laptop (occasionally both). I get up much earlier than the rest of the family, so it's a nice, quiet activity that I can get on with, without disturbing their beauty sleep. I guess that is the beauty of online study. You can do it anywhere. Even if I don't have Internet, so long as I know in advance, I can download readings and activities - enough to keep me ticking along.

My biggest study worry? I finish my MAODE this autumn but I don't feel ready to stop being a student. So what next? I might do some smaller scale study - upskill in a few specific areas... or I might consider higher level study... or I might embark on something work-related. I don't know yet.

Thursday, 23 March 2017

Indoor vs outdoor skiing

Well this week hasn't quite panned out as planned but it has been really good, nonetheless. As I arrived, puffing and panting at the T-bar lift station after my first run on Sunday morning, I remembered that outdoor skiing is totally different from indoor skiing. I also realised - and it totally took my breath away for a moment - that I haven't skied outdoors since winter 2011/12. I used to try to brush those emotional moments away but I have begun to realise that I need to experience them. They are part of the adapting process.

On Sunday, I had a teacher (from DSUK) called David and a helper called Tim. Really nice guys! They got me all kitted out with the model up from what I use at Xscape, the Biski Dynamique. It's like the Unique but with better suspension. In terms of skiing though, it felt very similar. I had another lesson on Wednesday with Peter but no helper, so Andy helped us out with the lift rig. Peter really made me work hard and let me feel the consequences of my good and bad skiing.

So these are the differences that immediately spring to mind between outdoor and indoor skiing.

1. Weather - I think it would be fair to say that Sunday's weather was challenging. It was hit and miss as to whether we would even get out on the mountain but the lifts were open so we got lucky. It was really windy with big gusts and that had an effect on temperature with wind-chill. For some of the lesson it was also hailing. Of course, that makes planning your route and turns more tricky. It also makes it feel more real. I love the feeling of the wind biting my face! It does something to my adrenaline levels and makes me feel alive.

2. Slope length - I don't know how many runs I get in at Xscape in an hour's lesson. I'm guessing between 8 and 10. On Sunday, I got 3 runs in 90 mins and on Wednesday I managed 4 in 2 hours. That's because everything is longer, a lot longer. I realised on my last run on Wednesday that I was really tired and I had to stop for a few moments half way to take a breather. It takes a lot more stamina to do long runs, even though the lift is also longer, giving a brief rest period.

3. Routes - At Xscape, there is really only one way down. You don't really have to plan much except for when to start so you don't hit a crowd. On Wednesday, we didn't have a helper so I didn't have anyone to follow. I'm awful at remembering routes and I took a wrong turn. As soon as I realised, I stopped, thinking Peter would help me get back on track but he didn't. He made me ski it, even though it was really narrow. I had to do really tight turns to keep my speed down, which was difficult but I did it and as well as learning to turn better, I also learned to plan my route more carefully.

Photo of me in the Biski Dynamique, at the top of the slope

Photo of me and Peter (teacher) getting ready to get on the lift

Whilst I was disappointed that Monday and Tuesday's lessons were cancelled because of high winds, I am glad we came and I do feel that I have learned a lot and achieved something. I've just realised that I never posted after my last lesson at Xscape. I had a big crash and injured my right elbow. I thought I might have broken it but fortunately not. It's taken a good 6 to 8 weeks to heal and it really scared me. This was my first time back skiing since then. I was very nervous on Sunday morning but I did it anyway and I feel much better again now. I'm still undecided about whether I want to go off-tethers again, as they would have probably stopped me getting so badly hurt. I'm also undecided about whether to transition to a monoski. What I do know, is that I want to continue skiing, as it makes me feel alive and exhilarated and it's really good exercise.

Sunday, 5 February 2017

What does 'accessible' mean anyway?

I've taken to doing mini-hikes on a Saturday afternoon. I'm trying to discover new places in our area that are good for getting fresh air and exercise... but of course, they have to be accessible. Fortunately, I found a couple of websites with information about different walks and places to visit. One of them is written by another wheelchair user called Jeff. Click here to have a look.
Yesterday afternoon, I decided to give Thrybergh Country Park a go. Jeff's description made it look really nice - a bit like Rother Valley, where we went a few weeks ago. Only yesterday it was 'I' not 'we'.

Looking at Jeff's photos and the green trees and dry path, I have to conclude that he visited at a more sensible time of year but maybe he's okay with wasps and nettles. I'm not. This is my time of year. Jeff describes the walk as 'suitable for all wheelchairs and manual wheelchairs' and I'm sure I saw the word 'flat' there somewhere, though I may have imagined that.

Now don't get me wrong, it was beautiful and for the most part, I enjoyed it very much, but I wouldn't have made it round without the help of a lovely man and his wife who pushed me up a muddy hill, so steep it took the combined efforts of all three of us and a nearby fence. If an electric chair had tried it, it would have definitely gone over backwards!

Also, although the bits of the path near the entrance were dry and in good condition, the rest was muddy, lumpy, bumpy and seriously hard work. It was good for exercise but I wouldn't recommend it for anyone who isn't well prepared!

So, here are some photos...















So what does 'accessible' mean? Somewhere that is accessible one day might not be on another day. This walk has part of the path closed in the winter and a diversion down an inaccessible path, hence my difficulty. In the summer though, it's probably fine. It still won't be accessible for me though. I can see evidence of parts of the path where I know in the summer I'd have nettles at face level. Just no. No thanks. 

Sunday, 29 January 2017

Two dreams come true!

Yesterday evening was amazing! Rewind 5 or 6 years and we spent New Year skiing in Ruka as a family. It was always so much fun being out on the slopes together. It's one of those sports that the whole family can do together and age and ability don't matter. It's all about learning together, laughing and building memories together. I'm so glad I've got fantastic memories of all our different skiing holidays, because it has been such a long time that we've not been able to go.

Until last night! It was a shame we didn't have my brother Matt with us but that'll come together another time. Maybe we can now look at a proper holiday with him, now that I'm skiing almost independently.

So, two dreams came true:
  1. Skiing with my family again.
  2. Skiing off-tethers.
Don't get me wrong, those tethers are great in a way. When you are sit-skiing for the first time and it feels really fast and out of control, those tethers give you the sense of independence with the security that if it all goes horribly wrong, someone's got your back. It's a bit like putting reins on a toddler. They think they're running along by themselves but if they trip, you can yank them up before they get hurt. There comes a time though, when those tethers are just not wanted anymore and that time has come. 

So, without further ado, here's a slightly longer than usual video of my lesson. It was an hour's lesson with my new Apeman camera fixed to my front and Dan, in his new green coach coat, videoing on my phone. So I got home with 90 minutes of footage, which I've reluctantly edited down to 10 minutes.


We had originally planned this trip during the Christmas holidays and due to a miscommunication at reception, it didn't happen. But I'm forever telling my staff that customer service is all about what we do when mistakes happen. I have to say, Xscape excelled on this one, mostly thanks to Adam, and it was well worth the wait to feel the way I felt last night. Massive thanks to Xscape for getting their adaptive skiing lessons up and running (when I first enquired a year or so back, they had stopped) and for investing in the kit I use. Thank you to Adam for teaching me how to ski a biski and for believing in my dream of doing it independently. And thank you to Dan for being a regular helper and especially for coming in last night to work an extra late night as a volunteer. 

If anyone's reading this and wondering whether to give adaptive skiing a go at Xscape, Castleford, I have only one thing to say... DO IT! Do it now!

Saturday, 7 January 2017

Accessible walks - Doncaster Lakeside

I discovered this walk from a website called Jeff's Wheelchair Walks, which lists a number of generally accessible places to get some fresh air and exercise. The first time I attempted the walk around the lake in Doncaster, I underestimated the distance somewhat and nearly wiped out my poor mum-in-law. If you're looking for a quick 15 minute stroll, this isn't it.

Usually, I park near the Vue Cinema and Brewer's Fayre at Lakeside (North) but you have to be a bit sneaky about using their toilets and sneaky isn't that easy with a wheelchair and freewheel. I kind of stand out like a sore thumb. So today, I parked at the shopping outlet. There's loads of accessible parking and there are toilets on site (radar key).

Here's my route, which I did in an anticlockwise direction:

Map showing my route around the lake, beginning and ending at the retail outlet.


From the car park, I headed back towards the Premier Inn and left to the lake. Where you join the walk, there is a map and a board telling you about the different birds that can be seen.

Large sign telling you about the different birds that can be seen here.

Large, colourful map of the walk, showing points of interest.

What I like about this walk is that the paths are all paved and flat. There is minimal camber and it's a pretty good surface. There's always plenty of people around, so I feel quite safe to walk there alone but there is still a peaceful feeling as you follow the route. For me, it's a good length walk. Today I remembered to set my Google Fit app running from leaving the car and it measured 5.3 km, which took me almost exactly an hour. I would have done that much quicker if I'd just kept going but I stopped a few times to take photos.

Here are some of my favourite photos from today:

The fountain in the middle of the lake, in focus so you can see the individual drops of water.

Fountain in the middle of the lake, out of focus so the water looks soft and blurry.

A swan dipping for food with 2 Canada geese and a smaller bird swimming past.

Black and white picture of the fountain and a wooden bridge.

Picture of a swan looking into the lake for food.

Picture of the same swan with its head under water and its tail up, catching food.

Picture of a twig on a tree with new buds emerging.

Looking across to the shore from the island, there are hundreds of birds hoping to be fed.

So is there anything I don't like about this walk? Well, only one thing. The bridge that links the two islands is seriously steep. When Neil was with me last time I went, we managed a team effort to get me up the slope but I wouldn't dare attempt it alone. I think I'd tip over backwards!