Friday, 29 December 2017
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 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
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.
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!
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.
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
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...
Regular food for adults but who have expensive taste...
And the senior citizens' daily special...
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...
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.
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.
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
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.
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.
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
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
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:
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
This summer has been different. Around Christmas time we started digging up this...
... and turning it gradually into this...
- it looks much nicer
- it's wheelchair friendly
- there are raised beds for my veggies
- there are 'safe' places for me to sit.
Monday, 10 July 2017
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.
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 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
|Kemi's answer to Stonehenge?|
|Walk round the nature reserve|
|Kemi's Pink Church|
|The town - clean, light and wide|
Saturday, 8 July 2017
|My Personal Learning Environment|
Monday, 26 June 2017
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
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!
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
2009 - The boys were quite young. We cycled into Oulu and had a picnic in Ainola Park. The snow had melted.
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
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...
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.
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
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.
Sunday, 5 February 2017
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...
Sunday, 29 January 2017
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:
- Skiing with my family again.
- Skiing off-tethers.
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.
Saturday, 7 January 2017
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:
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.
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:
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!