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Saturday, 5 April 2014

Small Steps To Independence

"Success is steady progress toward one's personal goals."
Jim Rohn

Gosh, it's been four days since I posted. I hadn't meant to leave it quite so long. I had it in mind to post this entry yesterday, but my friend suggested quite a while ago that I give Firefly a watch and on Thursday I finally got around to it. There's only fourteen episodes and the movie Serenity, so I ended up binge watching over Thursday and Friday. Thursday and Friday have become my favourite days. In a weird way, it feels like they were just meant to be.

When I talked to my OT she suggested I start thinking about what skills I need to live by myself and begin to obtain them. In relation to that, we discussed whether not I was able to make myself food etc. To be honest, it's one of those things I just never really did. It wasn't a question of whether I could physically do it or not, but there was always someone there to do it for me and what's more, our kitchen isn't at all accessible. The counters are too high for me in my manual wheelchair, as is the fridge. That was one of the issues they were going to address if they had done the work to my parent's house. And if you know I have an electric wheelchair that raises up and you're wondering why I don't use that, the reason is pretty simple. I value the fact I can use my legs for moving my manual chair when I'm in the house. I also find my manual chair a lot more comfy to sit in. If I were to start using my electric wheelchair, the strength in my legs would suffer and as most people are aware, but particularly those with muscle wasting diseases.. 'if you don't use it, you lose it'.  So I guess up until now, I've always taken the easy option. Now and again I would make my own tea, but I usually just waited until someone was making one for themselves. Much better than having to bother someone to reach me a cup and a tea bag. And then I could only lift the kettle if there wasn't too much water in it, same with the milk. Plus my mum always worried about me struggling to carry a kettle of boiling water, over my lap. Then there was other things I asked for help with, were admittedly I was just being lazy. Like getting things from another room, or even from across the room. It was a bad habit that I'm not proud of. But as much as people do trivial things that they don't really think about, I asked for trivial things and didn't really think about it.

But after the OT's visit, I realised I need to try more. Even if it's a struggle. I can't just take the easy option all the time, because I won't always have the easy option. Plus I need to know what I can and can't do, because even I don't truly know what I'm physically capable of. That was something I always found out when I was by myself, when there was nobody here to call on. And it was during those times, when I figured out a problem all on my own, that I felt what it's like to actually achieve something. Even the most trivial things, that people do without thought and take for granted.. like finding a way to pick up the front door key off the floor, and open the front door to let my cat in without letting my dogs out. And it may have taken me twenty minutes or so, but I couldn't have felt better about myself once I finally did it. Or the first time I made myself a cup of tea, working out how to reach the kettle and tea bags when they were too far back on the counter. For that I got a potato masher and hooked it around the kettle handle to pull it closer. I loved how inventive I could be when I needed to find a way to do something. The problem was, I was rarely on my own. And when I was, it wasn't for long. When people were there, I fell back into the habit of asking for help or my family would just do the stuff for me without me asking because it was the pattern we were used to. I'm a lot more aware of it now though. I don't let myself be lazy. I guess now I have independence as a goal, I know I need to start working towards it.

At first I started by just doing the little things I usually asked for help with. I'd go and get things myself, change my top myself and put my hoodie on myself and such. Which seems so little and simple, but after a few days of moving about more and such, I could feel the ache in my leg and stomach muscles from 'wheelchair walking' more. But even that I was proud of and happy about. It was like confirmation that I was actually doing more, and trying. It was during that week my mum told me her boss had offered her a new position at work, and it would mean she'd work Thursday and Friday instead of Monday and Friday. It also meant she'd start at noon both days, rather than 3:30pm and 2:30pm, so I would be on my own much longer in the day and from much earlier. She was worried about that, but I told her I thought it was a good thing because I needed to get used to being by myself.

It's been a couple of weeks now, and I have to say that Thursdays and Fridays are my favourite time of the week. I'm in the house by myself from noon until around 5:30pm. My mum puts everything I'd need to make myself lunch and such where I can reach it. I don't feel like that's a cheat, because if it was my place I would have that anyway. Her old work hours meant I usually had lunch before she left anyway, so I never had much cause to make myself food. But now, I basically have time to relax by myself, and I get to play house. I don't have her make my lunch up for me, because I think it's important I prepare it myself. Obviously it's not exclusive to Thursdays and Fridays. I've also done my own supper and such, but it's easier on those days because everything is put within reach. Whereas it's hard to do that every day, especially when there's others here to move things out of reach etc. In relation to the food, I think I'm getting better. I've been quite proud of myself and the fact I'm making the effort to actually eat things other than crisps and chocolate, which is what I'd have just snacked on in the past. I even took some photos of my progress.

I started out with just crackers and cheese, a Frube and tea. Which is simple enough. I've also got into the habit of watching a movie or tv show with my lunch. My desk is a nice little set up really.

Then I got a little more adventurous and tried making toast and jam for supper. As you can see, it didn't exactly go to plan. I burned my toast in the toaster. To be fair though, I blame the fact I'm not used to our toaster, rather than being incapable of making toast. It still tasted good though!

Yesterday, I got even more adventurous. Cereal and cheese on toast! You can't really see beneath the cheese, but I've even mastered not burning my toast. It's funny, but I am actually proud of myself and it's over something so small and silly. But I don't care. It's these little steps that will help me reach independence, so they're all important. No matter how trivial they seem.

So yeah, I feel like I've made some progress. Even if it's only a little. And now that I'm being more independently minded, I'm thinking of other little things I can do. Like I talked to my mum this morning about me using the toaster bags so I can make myself toasties for lunch. I mean, I'd like to branch out from toast and crackers. She said she could make up the toasties for me to put into the toaster, but I told her no thank you and that I want to do it all myself. No short cuts. Well, like I said.. we're not counting the fact everything needs to be put within reach. I know this post is a little self indulgent and blowing my own trumpet, but I think it's important to acknowledge anything that is a positive step towards your ultimate goal. And to me, this is all progress. 

On a side note, my Bomb Cosmetics stuff arrived yesterday! Gosh, I couldn't be happier with it. I was surprised at the lovely packaging too. I had to take photos.

The Little Hotties smell so good. I love my oil burner. I can't wait to get more of the Little Hotties, different smells etc. The problem with the tea cup candle is the fact it's so gosh darn pretty! I dunno if I'll be able to bring myself to lighting it. I guess I'll just have to wait for a special occasion. I also got a free soap, which is always nice. I'm going out tonight, so I'm going to use the Mango Body Polish during my shower, it smells so nice. So I definitely recommend checking bombcosmetics.co.uk out if you want to treat yourself or someone else. Their stuff is really lovely and it got here super fast.

Finding a way that I could light the candles myself was a little tricky. I don't have the strength to use normal lighters so I got matches, but ended up burning my finger the first time and that really put me off. Plus my mum wasn't happy with me using matches when I was by myself, in case the match broke off or something when it was lit. In the end we got one of those long lighters you get for light gas cookers. It's a little stiff, but I can just about manage it. I even found that little bit of independence thrilling.

On an extra and last side note, my sister made Nachos today and they were so good! So I thought I would make my readers jealous by taking pics of those too.

All I can think is that I could have made them myself if I could reach the microwave and the fridge! But all in good time, and I cannot wait. 


  1. Hey Sara, it was absolutely wonderful reading this. It's amazing the optimism you have, and I found myself smiling all the way through this article. These small steps to independence, they'll definitely be worth it, and I'm sure one day you'll make your own awesome nachos! :)

    1. Hey there. Thank you! I like to try and keep a balance between being an optimist and a realist. I'm really glad you enjoyed reading it. It's hard making quite mundane things seem interesting. :D Yes! One day I will reach the nacho goal, and more! :)


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