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Battling with buses

Getting the bus is difficult. In fact it’s more than difficult, getting the bus is hard. They don’t always have ramps, don’t always sink low enough to the pavement to lift my walking frame on, and there isn’t always enough room to fit her on safely and out of the way of the other passengers once I’m on it. Right now, I’m sitting here and I feel sick because I know that on Monday I’m going to have to face this on my own. I’m so nervous I don’t quite know how to put it into words.

It’s not the first time I’ve got the bus alone, I did it all the time when I had my last job and that was hard at times, but it did get easier once the drivers and regular customers got to know me. This time it will be different because it’s the first time I will have done it with Martha, who is bigger than my last walking frame Betsy was when I used to do it with her. To make things even more daunting for me I’ll be using a bus route I’ve never used where none of the divers will recognise me and the help I need. I’m also going to have to rely on them to tell me where to get off. This is something else that I don’t like doing.

How difficult taking the bus is for me depends on a few main factors:

  1. Whether or not the bus has a ramp
  2. Whether or not there is space for me to sit down with Martha in a place where no one will trip on her
  3. If there are pram/wheelchair/other walking aid users before me (I just have to wait until a bus comes along with a free disabled space otherwise)
  4. How low the bus dips to the kerb
  5. How high said kerb is for getting Martha off the bus safely

A lot of these factors vary from bus company to bus company and area too so it’s not like I can develop a strategy to deal with every journey.

It’s not so bad if there’s someone with me who can fold the frame up and carry it on for me but I can’t do this myself and on Monday I have no other choice but to travel. I know that it is a battle I’m just going to have to keep on having with myself until it doesn’t scare me anymore. The more I use the same routes the less worried I get.

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…

Toasty toes please

As well as Cerebral Palsy I also have quite poor circulation. My feet are always a wonderful purple or grey colour (I won’t gross you all out with a photo) and the only time they look my normal skin tone is when I’ve just got out of bed or the shower. I don’t know if this is connected to my disability or not. I keep meaning to ask the physios but I always forget. It wouldn’t really matter anyway. I’d still have both at the end of the day.

My poor little toes are usually always cold so it’s a rare day that you’ll ever see me without socks, sometimes even two pairs. My friends and family love it though because I must be the only person who loves getting loads of them at Christmas.

One year my boyfriend found what I think could well be one of my favourite inventions ever. It’s so good it has to be up there with the thermos mugs that help me carry tea round the house…he got me a pair of microwavable socks! Yes, you read that right, socks that I can heat up in the microwave. How amazing is that? He was really proud of himself for finding them and I have to admit that I was pretty dang imp

My Microwavable socks
My Microwavable socks

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I know that these might not be suitable for everyone to use. I am not a medical professional so I cannot suggest when anyone else should or should not use them. Therefore I can only speak of my personal experience with these mircowavable socks and the post should not be used as a replacement for medical advice.

Given that they have lavender in the bottom to make them smell all nice I can’t walk around the house in them but they are awesome when it’s snowing outside or I’ve spent too long in our stone floor kitchen. They stay warm for ages too which as far as I’m concerned is a bonus.

My hands don’t do particularly well in the winter either. My fingers often go an interesting shade of grey or extra white. This causes quite a problem when I’m out and about because it’s harder to grip my walking frame if the gloves I wear are too thick, but the thinner ones don’t protect me from the cold as well as I’d like. Often my hands end up going numb, which makes it harder to hold on to the walker anyway. Usually I just grit my teeth and wait it out until I get back inside and make myself a huge cup of tea to warm my hands up on. Strangely enough, I don’t have a problem with that.

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.

The Betsy Chronicles

Betsy and I at my graduation
Betsy and I at my graduation

Before my blue Nimbo Frame Martha came into my life, there was Betsy. She was my silver Kaye Walker. I promised you all that I’d tell you all her story one day and now that day has finally arrived.  If you’re a bit confused and want to find out why I choose to name my walking aids, you can check out this post here. If you want to just hear more about my old one Betsy then grab some snacks, pull up a chair and I’ll tell you.

As I’ve said before, she was given to me the day before Christmas Eve in 2011 and went into retirement last month. Usually these frames last longer than that but she was given to me second hand. I didn’t mind. I got a new frame when I needed it and that was all that mattered to me. I was in my final year at university by this point was making an effort to do as much walking as possible so I made sure we had some good times before we had to go our separate ways.

I like to think of Betsy as my frame of firsts. She came with me on lots of work experience placements, was there on the first day of work at my last job and came with me when I got the bus by myself for the first time. This last one didn’t go so well. It’s safe to say that catching the bus alone is not my strong point, but that’s a story for another time.

Oh, and she will always have a special place in my heart for being the frame that I used to get across the stage at my university graduation, which for me was the most symbolical moment  of my life so far.  It was the moment that me, my family and endless physios and doctors had been working towards all my life to date. People said I wouldn’t, people said I couldn’t and others thought I was just too lazy and would rely on my folks to do it all for me forever, so I upped-sticks, moved away  and went on an adventure to prove them all wrong. In that moment, I knew I’d made it. We all made it, and Betsy was there every step (or should that be roll) of the way. For that, I will love her forever.

My new Nimbo Frame Martha
My new Nimbo Frame Martha

There are a few ways that the Kaye Walker differed from my new frame Martha, aside from the fact that she was silver and not blue. My Kaye Walker didn’t have a seat on the back. This meant that I couldn’t always sit down as much as I would have liked, but it also made the frame a lot lighter than my current one. It meant that my arms didn’t get as tired when I was using it (guess this means I should probably work out more, huh?) and that it was easier to lift it up and down kurbs, and for me to deal with every time I got the front wheel stuck in a pot hole (this happened more times that I would care to admit).

It also means that the frame is less compact and takes uo more room in the car  but it was all still worth it in my eyes. Like I’ve said before I can now take rest breaks as and when I need them, sit down if I need to take notes when carrying out interview and I’m guaranteed to have somewhere to sit. To me it’s totally worth it even if it does mean I have to grow some muscle and buy less shopping on my trips out. In the end it’s probably better for my body and (my bank balance) anyway.