A catalouge of excitment

My appointment with the occupational therapist (OT) yesterday went well. We’ve recently had a new kitchen fitted in at home, so some of the tips and tricks I learned for managing to do a few bits and bats in the old one won’t really work anymore, which is frustrating and hard, given that it took so long to get used to them. Still, maybe the change will do me good and I’ll learn lots of new stuff that will be useful in the future.

The OT came out to the house and brought with her a couple of things that she thought might help me. These were a bread chopping board with raised edges so that things don’ t fly off and end up here, there and everywhere, like they usually do when I’m trying to butter bread. If you’re ever anywhere near me when I’m making a sandwich I suggest you stand well back because there’s a good chance you might end up covered in something, getting accidently elbowed in the ribs, or both.

The other one is a similar chopping board, with spikes on and a mini grater attached so that I could put something like a jacket potato on it while I get the cheese ready.   Usually when I do this, I have to hold the grater in my weak hand while it’s balanced on a plate, and the cheese in the other. Usually this means that the plate or bowl flies off it one direction, and the grater in the opposite. This makes a mess, and me even more frustrated when I have to try and clean it up.

These items have only been given to me on a short-term loan to see if I find them useful before I spend loads of money on things that don’t really work for me, which I think is a really good idea. The lady left me some catalogues to browse through too, which I’m really excited about, probably because it will remind me of going through the Argos at Christmas when I was a kid. I’ve had a quick flick through them and I didn’t realise just how much was out there! I’m going to sit and give them my full attention later with a cup of tea and see if anything catches my eye, or gives me an ideas of things we already have in the house that I can adapt.

We came up with a list of a few other things to try too over the next couple of weeks so we’ll see how things go. I haven’t played with these ones that she brought yesterday yet, but it’s on the to-do list for this weekend when I’ve bought some food to experiment with. I don’t watch to use the family shopping in case I butcher it beyond all recognition and it’s not edible afterwards. I know this might sound a bit dramatic but believe me when I say it’s entirely possible.

I really hope they help because it gets me down that I can’t help out with the cooking more. I’m willing to spend the cash if I think the difference will be worth it. This could be the start of something really good for me.

Surprise injections and more

So it turns out that the appointment that I had on Friday wasn’t so scary after all. In fact, I’d say it went rather well.

Quite a few things happened actually. We discussed maybe trying a new kind of splint as opposed to my callipers because they blister me so much, although I have to go for more appointments with a physio and someone who deals with splints to weigh up pros and cons first so I won’t go into details about that yet.

A few suggestions were made about things that might make my life in the kitchen a little bit easier. The occupation therapist who was there took my concerns on board and is going to do some research for me and try and get hold of some equipment for me to borrow to see how well it would work for me before I buy any. Again, I’ll let you know more when I do.

And, oh yeah, they gave me some more Botox in my left leg, which was an unexpected, (nice) surprise.

I’ve had this treatment done a few times as a kid, and once again last year as an adult and every time it has worked well for me. I mentioned to the doctor who was there (the same one who gave me the injections last year) that I thought it might be worth doing some more. She agreed that it would be.

“We can do it today, if you like” she said after giving it some thought.

“Er, yeah okay.” I said, a little shocked that that was an option.

And so we did.

I wasn’t expecting it but I wasn’t about to turn it down either.

“Bet you’re glad I came with you now,” Mum giggled as she helped me roll up my jean leg and gave me her hand to squeeze. Yes, I still like to do that. When I use to have them as a child, the would numb my legs  first with what they called “magic cream”. Now that I’m all grown up I don’t get that anymore, but I don’t think Mum minded me grasping onto her too much.

I personally don’t find that these injections hurt as such, it’s more like you’re being stung in my opinion, but it’s just nice to have someone there, you know?

Now that the deed has been done, it means that the intensive stretching has to start so that we can make the most out of it. So far, I think we’re doing pretty well at keeping on top of it, but it will be a couple of weeks before we’ll be able to tell what a difference it will make.

Let’s go, go, go!

The thing with laundry

When it comes to doing laundry, I have to get a little bit creative. Before I moved away from home my parents had always helped with it so it was a shock to the system when I had to do it for myself and I wasn’t entirely sure how I’d cope with it.

While I was at university I had help from an outside supportive living agency who would also assist me with my laundry, cooking, cleaning and shopping whenever I needed it so I know that it’s not something I’d ever have to  worry about too much if I ever did decide to live alone. Yet I hate to be defeated by anything (except my shoe laces – I gave up trying to tie those a long time ago) so I made the effort to find ways around washing my own clothes. I knew that I could always ask for help if it got too hard, but I wanted to be ready just in case there was ever a time I don’t have a choice, and so that I know I can do as much for myself as is physically possible.

Luckily I’d always managed to find somewhere to live where my bedroom had been on the ground floor so I didn’t have to fret about trying to get all my clothes downstairs to the washing machine because there was no way that I would have tried to carry the basket myself. Eventually I did manage to find a way around this problem though for if I ever want to give mum a hand at home where my bedroom is on the first floor and the washing machine isn’t. I have to get some plastic carrier bags (like the kind you get from the supermarket), fill them with whatever I’m planning on throwing in the washer, loop them around my wrist and go downstairs holding on to my handrails as normal. It usually takes three or four trips for me to gather a full load, but I get there in the end.

When my room was on the same floor as the kitchen at university I usually opted to do what I like to call the ‘crawl and push manoeuvre ‘ where I would get down on my knees on the floor and push whatever I had my clothes in along with me until I got them to where they needed to be. This took a while too but it was better than the alternative if I tried to carry it. When I would try to do this I would usually end up falling over (what a surprise) or I’d spill all my clothes all over the living room floor, neither of which are very good, especially not if the people you live with are around at the time and just so happen to see your unmentionables go flying across the room. My housemates were always really helpful and would help me if they were around though.

The difficulties don’t stop there. If for whatever reason I can’t use a dyer or my clothes need to be hung up on an airier before I can put them back in the wardrobe,  that takes me a fair amount of time too. I have to hold on to the airier for support while I put things onto it, which means that things often fall off again as fast as I can hang them there, so it takes ages (and a lot of mumbling to myself most of the time) to get everything to stay in place. The constant bending down to pick things up makes me quite tired too so I have to take a lot rest breaks too.

I used to use Betsy for extra drying space too if I wasn’t planning on going out anywhere. I haven’t had to do this with Martha yet, but I’m sure her time will come.

Thank goodness for my walk-in shower

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My walk-in shower

When I woke up this morning I was a zombie, there really is no other way to describe it other than that. My legs and back had decided that last night they were going to Tag Team against me and ache so much that they would keep me awake most of the night. Next time they plan on doing this, I hope they tell me so I can have an afternoon nap first. Despite their best efforts I think I managed t catch somewhere between three to four hours of Zs  which is not so great –especially when one of those blissful hours was between 7:30 and 8:30 this morning. I’d have loved at least another half an hour but I have lots to do today so I didn’t really have a choice but it suck it up and get on with it. All I can say is, thank goodness I have a walk-in shower.

For a long time, showering was something that my mum had to help me with because we didn’t get the wet-room installed until I was around 17 or 18.  From the age of around 15 I had other things that would help me to get washed by myself including a swivel bather and a bath board, but before that mum had to lift me in and out of our bath shower, and stay there with me to make sure I did slip. This did happen a couple of times though, given that my balance is less than good, especially on a bad day, and it also meant that my daily wash was done whenever mum could fit it in around all the other household chores. Now I can do it whenever I like, which is something I will never take for granted. It takes some pressure off my mother too. I’m grateful that she used to help me all the time (she still does wih some things) but I’m sure this is one thing she’s quite happy about not having to do anymore.

Thanks to the wet room I can just stroll in (quite literally) whenever I like, plonk myself down on the seat and stay there until my aches and pains have gone away, or until I feel human enough to bother facing the day. It works too. My legs aren’t as bad as they were first thing today, I’m half-awake and I’m sitting here writing this post. Not bad, eh?

Like most things in life, getting the wet room installed was a trade off. It meant that we had to get our bath taken out which was really useful on the days that I was stiff and the shower doesn’t work quite so well for that, but at least I have my independence. There is the odd day that it decides to get blocked and flood, but the bathroom is designed to handle the water. It just means we have to do the mopping up afterwards.

I love simple things

Today I’m in a good mood. I’ve just found out I have a job interview next week, I got past the Candy Crush Saga level I was stuck on, I’m listening to You Me At Six and I’ve just had tea. Yes, today is a day for appreciating the little things in life, so that is exactly what I’m going to do. Starting with the really simple mug that means I can carry drinks around the house by myself.

There’s no point in me even trying to deny it. Anyone who knows me will tell how much I love tea. My boyfriend often compares me to a character from the video game The Sims, except he says that instead of having ‘fun’ and ‘social’ moodlets I have one for tea and one for how much sunlight I get because I’m “solar power and tea fuelled”. His words, not mine.

My Thermos Mug
My Thermos Mug

For a long time, having a cuppa was a source of frustration for me as well as enjoyment, and of course hydration. I could make myself a drink (and anyone else who wanted one if I was feeling generous) as long as I didn’t fill the kettle up too much and make it too heavy in one go. But there was a catch: I had to stand in the kitchen to drink it. I couldn’t carry them anywhere because my CP means I have to have a walking aid or something to hold on to to help me keep my balance. This means I can’t carry any liquid in any sort of cup that doesn’t have a lid without bathing myself in it because I can’t concentrate on keeping me and the drink upright at the same time. Really not a good idea where boiling water is concerned. With anything cold I carry it in a bottle, but this doesn’t work with tea. I would go and sit down to wait for it to cool, go and take a few sips, go do something then come back and take a few more. This would be repeated until the mug was empty. Needless to say I ended up giving up on, or forgetting about more of them than I actually finished. This, to a self-confessed tea addict is a very bad thing.

Then, I finally discovered thermal cups, like the one I’ve included a photo of here. The lids mean I can usually take it from room to room without slopping it everywhere (just a waste of perfectly good tea, if you ask me) or scolding myself as long as I hold onto something for support with the other hand and go really slowly. I also have  to make sure there are lots to places I can put it down on safely in case I feel like I’m going to take a tumble on the way to my seat. No brew is worth that. I even have more than one so I can be lazy when it comes to the washing up. (Not that I would ever do that, obviously). So I’m happy and my mum’s happy because she gets out of kettle duty every once in a while and doesn’t have to carry mine all over the house for me as often as she used to. I’ve gained so much extra independence all for the sake of a couple of pounds.

Obviously, these might not be something that everyone can use, and I know that what works for me might not work for everyone else. I’m not a medical professional so I can’t give advice on wheather this is something that would work for others or not, and I can only talk about my personal experience about how they work for me alone.