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.
When I first started this blog, I was new to using a wheelchair. I had cauda equina syndrome in April 2012, which damaged the nerves to my left leg and saddle. It took me a year or two before I considered using a wheelchair but I'm so glad I did. It gives me the freedom to live a normal life and do most of the things I want to do. In this blog, I share my own experiences of being a part-time wheelchair user, in the hope that it will inspire and encourage other newly disabled people.
O Nicki, I wondered where you had gone too...I now know...Wish I had something to say..but I don't.....I have a friend battling to accept her wheelchair that has been delivered after putting it off for many years....She couldn't even look at it, I have a feeling she is just sending it wicked evil glances as I write this still.....My heart breaks for you girls, but then I know its not what you want either...like you say....so yea, what to say except you are brave amazing courageous and this too shall pass when the time is right....till then go easy on your soul as my mom told me once...remember the tiger within and when its ready it too shall emerge again..so many porno cliches I could pop here but I wont....no one needs to hear them when you down and out... just keep being struggling with the waves I suppose....
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