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Tuesday, 27 May 2014

Control Or Lack Thereof

"I don't get upset over things I can control, because if I can control them there's no sense in getting upset. And I don't get upset over things I can't control, because if I can't control them there's no sense in getting upset."
Mickey Rivers

This entry is just a little bit of an update on how I've been since my last post. The day after my last blog (Wednesday 21st May) I had a visit from my Occupational Therapist and a Physiotherapist. They were coming out to put together a report for my Care Manager. Basically their recommendations for my care. Things like the fact I'll have to be hoisted as I can't take my own weight or straighten my knees or hips. We also talked a bit about how many visits a day and how many carers I'd have, deciding 4 visits and 2 carers at a time was about right. I'm going to start off with two half hour visits, one in the morning and one at night, and two fifteen minute visits in between for the bathroom. Since we're starting this off in the house I live in with my parents so I can get used to it before moving, my family are going to continue with food prep. They also told me that in the house I live in right now that the carers won't be able to shower me as they wouldn't be allowed to use the method of showering I currently use, so my family will have to continue with that too. Basically at the moment I have a bath board that goes across the bath and I sit on that. I guess that isn't in line with health and safety, even if I can balance perfectly well on it and find it comfortable. I suppose that's the kind of thing I will have to get used to. There is going to be a bunch of rules I'm going to have to play by, and a lot that isn't in my control.

I think after their visit a lot of it became very real and started to sink in. Not just for me, but for my parents too. Even though they knew I was having carers in our home, I don't think they realised it would be 4 visits a day, 7 days a week. My mum started saying she'd have to get locks on her bedroom door and that we'd have to be careful what we left around the house, in case they steal from us. Admittedly that didn't help with my own anxiety. I know this is difficult for my parents as they're not used to having people in the house, but them emphasising the fact these are strangers and stressing how vulnerable it makes them feel even having them in the house makes me feel so much more anxious about the fact these people will be seeing me at my most vulnerable. And that some day I'll be completely alone and relying on them. I feel guilty I'm putting my parents through this, but at the end of the day it's only temporary for them. This is the rest of my life, and I have no control over it. I think on some level my parents think that this is my choice, and therefore I can't really complain. I don't see it as a choice. This is the reality of living as a disabled adult. I could have coasted by in my parent's care, but as I've said many times before... they're not going to be here forever.

As it's started to sink in I've felt a lot more anxious about it all. You could even say I've been second guessing whether this is the right thing. But deep down I know it is. I know it has to be done, and the only reason I'm second guessing myself is the fear of change. I'm afraid that I'm swapping one life with a lack of control and independence for another. One with more restrictions, living by someone else's schedule and another's code of health and safety. Already it's been decided I have to swap bedrooms with my parents as carers need to be able to get on both sides of the bed for hoisting. I don't even have control over something so simple as the lay out of my room.  Luckily at least my parents didn't take that recommendation so bad. And the one plus side is that their room has an en-suite and the alternative would be they'd hoist me on to my toilet chair in my room and push me across the hall to my bathroom. So there is a bright side to moving rooms.

I know I've rambled on quite a lot in this entry and it seems like it's all silly complaints. I should be happy and excited that things are moving forward, and I do know that this is the best for not just my future but my parent's too. Change is just always difficult, especially when you aren't capable of being in control of a lot of things. I wouldn't be human if I didn't have fears and doubts, especially about such an unknown. My parents and family have always done my care, even when I was in hospital a nurse never so much as showered me.

So now the wait continues. Last I heard from my Care Manager was that he was requesting funding. It could be a while before the next part happens, where we discuss what times the carers will come etc. I think my biggest worry is what time of night they will come to put me to bed. I'm assuming it's going to be earlier than I'm used to. It's going to be quite an adjustment period when it all finally does get put in place, but hopefully it's nothing I can't handle.

Other things that happened during the course of the week since my last entry, my mum, dad and I all went for a walk around the coast and got ice cream. I really enjoyed it. I think I needed out. I've been having to actively keep panic attacks at bay still, especially over the last week and so I think the nice walk helped me relax some. I think I need to do that more often. It was really lovely weather and I got some really nice photos. They're especially nice thanks to Instagram. What did we do before Instagram filters? I've included some of the photos below.

Then on Friday night Eva and I headed to the cinema to see Bad Neighbours (or Neighbors), the new Seth Rogen movie. Again, I think the comedy really helped me get my mind off stuff. I mean if anything is going to distract you and put a smile on your face it's Seth Rogen, not to mention Dave Franco, Zac Efron and Christopher Mintz-Plasse. Over all, it was just a really good cast and a really funny movie. I would recommend it. 

I know my entries have become a little less frequent, I'm trying to do at least one a week. However I have a couple of ideas for the next two! So hopefully the next one will be up tomorrow. Prepare for cute doggies!

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