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!

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.

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.

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.

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.

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.