The Surgery Diaries: Getting more walking frames

So there’s just under a week left of August which means that my posts reflecting on my surgery six years ago in this month are almost over. Thanks for sticking with me so far. Today I’m going to fast forward to when I had the second operation. If you’ve missed anything so far and want to catch up, feel free to do that by clicking here.

Eventually I managed to build up my walking stamina enough to be able to do it around the house again. The problem was that the Kaye Walker frame I was using at the time was too big to fit around our house, so I was given some smaller ones. One that went in front me but didn’t have wheels so I had to pick it up to walk with, and one that did have them so I could roll. We tried crutches too, but the physio and I decided very quickly that they weren’t the right kind of walking aid for me. I felt like I was going to fall over the second I got hold of them, and apparently it showed because the colour drained from my face.

I was back in my own bedroom too by this point and was no longer sleeping in the dining room on the ground floor. Mum made dad redecorate it for me as a special treat and it was nice to be back in my own space again, if not a little strange. Being able to use the bathroom unaided was also something I will never, ever take for granted again.

One little frame stayed upstairs and we kept the other one downstairs. I was surprise how well I managed with a frame that went in front of me rather than one I pulled behind me. There were a couple of mishaps, including one where I almost lost a front tooth. Thankfully it only came slightly out of place and was fixed when Mum accidently bumped my wheelchair down the kurb a bit too hard in her rush to get me to the dentist. My jaws rattled together and somehow this managed to knock it back into the right position it had always been in. Talk about lucky. I just had to eat soft foods for a week while it healed and it was good as new. Phew!

I was starting to finally feel a little bit better about how things were starting to happen. I could see progress every day, even if it was quite small some of the time, but it was starting to happen. I could see a time when I could walk unaided again, and I’ll tell you more about that in my next post!

The Surgery Diaries: Learning not to rush it

So there’s just over a week left of August which means that my posts reflecting on my surgery six years ago in this month are almost over. Thanks for sticking with me so far. Today I’m going to fast forward to when I had the second operation. If you’ve missed anything so far and want to catch up, feel free to do that by clicking here.

Six weeks after  I had the muscles in my legs lengthened, I went back to see my surgeon who was happy for the pots to come off my feet, and for me to only have to wear my leg gaiters at night from there on in. This was an amazing feeling! It was kind of nice to be back in my own wheelchair too, I won’t lie.

One of the things that excited me most of all was the fact that I could start to try and go back to wearing jeans again, rather than all the skirts and dresses that I’d bought especially to wear over the previous couple of months. It helped me start to feel like I was getting back to my old self again, even though there was still a really long way to go.

This was the time when all the hard work of getting myself back on my feet and making the most of the surgeries that I’d been fortunate enough to have on the NHS. There were often times when I was angry and frustrated because things didn’t happen at the pace I wanted them to and I felt like I should have been making things happen right away.

I was starting to walk again now, but very slowly. I could only comfortably manage a few steps at a time and I couldn’t even imagine being able to ever do it without holding onto something ever again. If I’m being completely honest, I don’t think that the enormity of what I was going through hit me until a point a couple of weeks after my second surgery. I’d been doing some work with one of the people helping me with my recovery. I think we’d been practicing getting me used to standing still for short bursts of time to build up my stamina. I was holding on to a table for dear life, but I was doing it. I walked part-way around the table I was using (gripping it tightly, of course) and then was allowed to collapse into my wheelchair for a much needed rest. I was feeling especially frustrated because it hurt quite a lot and used up most of my energy, and the fact that this was something I could have done quite easily before I’d had my operations made it feel worse. I decided to point out how I was feeling to the person helping me, and then they said something that really made reality hit home.

This person mentioned something about learning to walk again.

Oh, Maybe that’s kind of what I was doing In a way? After all, a few months before I hadn’t been able to stand, or even crawl and now I was literally having to take things one step at a time. Dang. I hadn’t looked at it that way before. Maybe I was just being too hard on myself. My family and friends had been using similar phrases for weeks and I’d been brushing them off, refusing to believe that anything that had been happening to me over the last couple of months had been a big deal. After that I tried to keep a rational head when I was getting mad and not judge myself too harshly.

Squeaking in the rain

My callipers
My callipers

Over the years, I’ve tried lots of different things to improve my walking. I’ve tried various leg splits, sleeping with my lower limbs strapped into something called gaiters to keep them stretched out at night, and even surgery. This year though we decided to be different and try something I’ve never had before: callipers.

I’m willing to give anything a go that has a chance at keeping me on my feet longer than I would be if I didn’t try so when they were suggested I jumped (not literally) at the opportunity. I prepared myself for breaking in pains, possible blisters and even being told to “Run Forrest, run” from time to time. One thing I was not ready for though, was the endless squeaking. I didn’t realise there would be squeaking.

Now, every time I go out in the rain I find myself sympathising with the poor old Tin Man from the Wizard of Oz. I only have to put up with it until I can get home again and put something on them to stop it, how must he have felt?

If I’m honest I’m used to my equipment making higher pitched noises that I’m pretty sure no human could make. My old wheelchair developed such a bad one in high school that I could be heard coming to my lesson all the way down corridor and even Betsy wouldn’t hesitate to let me know when she was unhappy about the weather conditions, but they didn’t bother me as much. The noise is far much more irritating when you realise it’s actually coming from you and not something you have with you.

Still, I shouldn’t complain and if it helps my legs get better then it’s a small price to pay and I’ll happily put up with it for as long as it takes. It just means that I’d be useless at a game of Hide and Seek because you’d probably hear where I was going and I don’t think I’ll be getting a call from any spy agencies anytime soon. Ah well, c’est la vie, I guess…

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.

 

Please, call her Martha

Martha and I
Martha and I

Well, I think it’s about time I introduced you all to me trusty counterpart Martha – AKA my very new, and indeed very blue, Nimbo walking frame. I know what you’re all thinking –pfft, she’s named it, why on Earth would she do that, nutter – well, I’ll tell you.

I’ve always had a frame for as long as I can remember but I haven’t always given them names. That tradition started with my last glamorous aluminium-assistant Betsy who sadly had to go to walker Heaven about three weeks ago after about a year-and-a-half by my side (I’ll tell you more of her life story another time, though).  Her name came about almost by accident. I was given her by the hospital the day before Christmas Eve and I was really excited because the last one was getting so wobbly that I couldn’t wait to get her. In my excitement I decided to announce to the physiotherapist that gave her to me that she deserved a name and that name would be Betsy.  Enough about Betsy for now though, let’s let Martha have her moment of glory first.

After a while, and many confused friends later, I decided that this should be a tradition that I would keep up.  After all, when you are a child you name the teddy bear that you carry about with you all the time and lose on at least sixteen occasions while you’re growing up, so why shouldn’t I do it? And, even though I’m not embarrassed by the fact I need a frame in any way, I think it sounds nicer to ask my parents if they’ve put Martha in the car rather that saying ‘did you remember to bring ‘the frame’”.

Giving her a name is great too because it helps get me out of trouble “Martha didn’t mean to hit your ankles Mum. She’s got PMT today and is very sorry, she won’t do it again”. My mum can’t help but laugh every time I pull that excuse.

It’s a great ice-breaker at parties too. When I say “I’m Nic and this is Martha” they usually look at me like I’ve had one too many, then ponder on it for a minute and offer up what their own choice of name would be in my situation. I think sometimes, it helps people who’ve never met me before relax a bit and realise that they can ask whatever they want about the CP, and that I’m probably not going to mind, as long as they’re polite about it.

As I said, Martha is very new to me but she’s also very special because she is the first walker I’ve ever had with a seat attached which makes all the difference. Now, I don’t have to worry about there being somewhere for me to sit so that I can take notes without falling over if I’m interviewing someone at an event, I can rest if my sister is taking too long to decide if she wants to buy that dress she’s been mulling over for an hour, and I never have to worry if there’ll be a free chair that I can use in the pub. It is these little things that make the biggest difference.

Welcome to my world, Martha. We’re gonna have a blast!

Here goes nothing…

My name is Nic and I think that I’m lucky. Over the years I’ve been called many things: brave, determined, courageous; or freak, lazy and other things depending on whom you speak to. But no one ever seems to call me lucky.

I was born with Cerebral Palsy, a physical disability that effects the way I move – mostly my legs, but more often than not my left arm and I have to have a stern conversation before it will do what I want it to. I usually win that one in the end. Eventually. I don’t know exactly what caused it but I was born fourteen weeks too soon and sometime after that I had a bleed in my brain. Going any deeper than this to find out what caused the bleed doesn’t really interest me. As far as I’m concerned I made it and that’s all that counts. I can still walk, talk and do a lot of things for myself – except tie my own shoelaces – that I’m still working on – but given that I’m twenty four I should probably just give up and focus my time and energy on doing something way more fun and worth the effort, like making endless cups of tea. That I can do, and if there’s one thing in life I love more than the awesome-ness that is chocolate, it’s tea.

Although I can walk by myself around the house I never go anywhere without my trusty walking fame (hence the blog name), or on bad day, my wheelchair. I don’t have the balance to get up curbs by myself and the shock of standing on an uneven bit of pavement would send me crashing to my knees so I choose to play it safe but that’s okay. Falling over isn’t nearly as funny as it sometimes looks. Although, the time I somehow managed to fall into the laundry basket and broke it was pretty funny, or the time I was a toddler reached out to grab the person in front of me to catch myself and ended up pulling the poor man’s trousers down (just his trousers – nothing more, thank you). Well, I’m told that was funny, but really I’m not so sure…

I also make vlogs on YouTube and you can check out my channel here. In the meantime, here’s my channel trailer for you all to have a look at: