Two weeks ago I was a little bit naughty and wreckless. Yes, I went and bought some new pyjamas! Firstly, this was wreckless because I had had barely any sleep the night before. Secondly because it involved going out and not staying in when I should really have been resting and thirdly it involved a nerve racking, rolller coster ride of a wheelchair journey. However a woman that does as much lounging around in their jimmy jams as I do needs to keep up a good stock of what I like to term 'day wear.' To give myself credit as well although my sleep had been very poor the night before, in the morning I wasn't feeling too fatigued and felt as though I could just about manage it. Sometimes, as much as you know what you should and shouldn't do and drum into your self the importance of pacing and the dreaded post exertion malaise, you just have to take the bull by the horns while the going is good. Because good days are few and far between, good hours can be. So you can see our logic in making the most of feeling 'not too bad.'
So in the spirit of making the most of things I decided a trip to Primark to stock up was on the cards. So it meant another trip on the bus into Chester. However I have to say that this time didn't go as smoothly, smoothly being the opperative word. No Mum that is nothing to do with your driving (wheelchair that is) in comparisson to my sisters! Firstly the bus driver on the park and ride wouldn't put the ramp down. There is a ramp that folds into the step on the bus for disabled passengers and buggies. He did lower the suspension so that the step was lower but for some unknown reason would not lower the ramp; even after I asked. So I just stared at him blankly. Was he expecting me to get out and walk on to the bus. Now I know that I may not be in plaster or look as though there is anything physically wrong but the wheelchair is a big give away that there is something wrong. I'm not just using it for the fun of it. Maybe he was expecting my Mum to lift my chair on? I am in no way heavy but I'm not a small child either that can be lifted up steps and curbs easily. Neither should my Mum be expected to do so. She could easily do her self an injury.
Just as a side note I think that there should be some kind of manual handling help for parents or other carers. Maybe there is one? If anyone knows please let me know. It's something I'll have to research. Being a stage manager lifting properly is something that got drummed into us. I think of all the times where I need help to be lifted, especially on really bad days and think that some tips on good techniques would be useful. Obviously I know about lifting bits of steeldeck but you can't hurt steeldeck like you can a person.
Anyway back on topic. In the end the driver ended up lifting me on and although he said it in jest he called us novices. Now, I have grown to see my chair as a great help and not a hinderance but ideally I don't want to be anything more than a novice. I don't want to be bound to my chair. Even if I had been in a chair for years though the fact remains that I should not have to risk damage to myself by stepping onto the bus. Or my Mum should not be made to be put at risk of injuring herself by lifting me. Not on to a bus that has been designed to help disabled people to use public transport. What was the problem in simply pulling out the ramp? Why put yourself at more risk by then having to lift me on? Needless to say I was not happy.
Again when it came to getting off the bus he didn't lower the ramp. Meaning that he had to lift/ tip me off. I was clinging onto my arm rests in fear. Again no different to how you would handle a child in a buggy. But I'm not a child. Getting off the bus like that actually scared me. Something I think I should definitely not be made to feel. It felt rather indignifying. If that was the only way to get on and off the bus then fair enough but I'd chosen to use the park and ride because of it's accessibility. It just really upset me. I know it doesn't sound like much but until you're the one being subjected to that behaviour you don't get a sense of what it's like.
Moving on to some funnier tales from that day. I stocked up on lots of new pair of pyjamas and slippers, as well as some winter staple pieces. My Mum got some things as well. By the time we got to the till the fabric basket that I had resting on my thighs was pretty heavy, which wasn't great for them. When the cashier put it all into bags though there were 3 of them. Plus they are those awkward big brown paper ones. The ones that are a nightmare if it's raining because all your purchases get wet and they usually break ( in my experience they always break no matter what the weather meaning you have to carry them like a sack of potatoes) I looked at the bags and thought damn it how are we going to manage with all them. Clearly we had not thought this through. I just want to say for those that don't know Primark is a shop that sells cheap clothes, so getting loads of things is usually quite commonplace. I am not rolling in money. Especially for basics, nightwear and holiday wear. So there we are my mum, me and my wheels and three big shopping bags.
My wheelchair is a self propelled one, not that I do much self propelling as it hurts so much. Really it does! The problem though with self propelled wheelchairs is that you can't hang bags off the handles because they get stuck in the spokes and can make a right racket. So what we ended up doing was piling the bags up onto my legs (ouch!) until I could just about see if I squashed the bags down a bit. Painful but oh so funny! I hope you all have a good visual in your heads. I'm sure some people in Chester that day had a secret chuckle too as we made our way back to the bus station. Honestly the lengths we go to for fashion. Even if it is pyjamas.
For all our struggles it only rubbed salt into the wound/ made the outing more surreal when at the bus station we saw a man with only one arm and one leg in a wheelchair propelling himself along without any assistance. Luckily the bus trip home was better. The driver did put the ramp down, much to my relief. Although dozy me did unfortunately have to end on a bum note. It very nearly was a bum note too. I decided that if my Mum took the bags, even though a lovely old man offered to take them ( he was looking at me with some concern as I was grimacing in pain on the bus) then I could get down the ramp. I completely misjudged the ramp and ended up with one wheel off the ramp and one on. Luckily for me I was saved by the bus shelter and didn't crash into it too hard that I was hurt. Not sure how the bus shelter fared though. After everything and because I was tired and in a lot of pain I just broke out in laughter.
Overall though as I have said I am grateful for having a wheelchair to be able to get out. I have taken to referring to it as my trusty steed. That bus driver really got on my wick though. No one deserves to be put at risk or treated like an object. Anyone else had any bad experiences with being in a wheelchair or find that you are treated differently? Leave a comment and let me know. I hope you have enjoyed some of my crazy tales though too.