Tag: disability

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 fine art of making people smile

In all honesty I was actually planning on blogging today something happened that I feel the need to tell you all about. Martha and I made some strangers smile. That is always a good thing if you ask me.

When I woke up this morning I had no plans to leave the house, but when I saw how sunny it was there was no way I could pass up my mum’s invitation to go and visit a local art gallery. We’d probably been there less than five minutes when I heard a voice ask “Can I have my car painted that colour?”

Being the nosey person that I am I turned around to see which of the paintings he was looking at and was pleasantly surprised when I saw a man by the side of me admiring my blue walking frame Martha,

“I wonder if I could have my car painted that colour?” he grinned “It’s lovely.” I nodded back at him and was just about to launch into my why-I-love-Martha so much speech when his family came and joined us and started chatting about how great they thought she was and listed all the things they like about her: the blue paint (of course), the fact that she still looks like new (give it another two weeks and I’ll have scratched all the paintwork off) and the fact that she has a seat. I couldn’t help but chuckle to myself, they’d come out to see all the brilliant work of real artists and here they were stood looking at Martha and praising her as if she were a prize winning picture. After a couple of minutes of smiling and chatting they waved us goodbye and went on to look at other things, but I was still left feeling all warm and humbled inside that I’d managed to make someone else smile. I love that.

When I was a teenager I once had a man stop me in the supermarket when I was on holiday and tell me that he “hoped his granddaughter ended up like me” because they’d just found out she was disabled and they didn’t know if she’d ever be able to walk. At the time I felt really awkward and mumbled something about the doctors telling my parents I might be able to walk around the supermarket at best so never to give up. At the time I felt guilty because I felt like I should have been able to do or say something more. It is only now I’m older that I see I probably did far more than I had realised. If this happened to me tomorrow I’d handle it better. I’d feel proud that I managed to give someone I’d never met before some hope, even if it was just for a moment. I’d feel happy that he’d had the courage to pay me the compliment. I’d like to think that he went home and gave his family hope too. It is moments like this that make me feel very humble and very grateful. That day I made a stranger smile. That day, the same stranger made me smile too.