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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!


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.