Escapades and accessible bathrooms

So my past weekends have been insightful – in unfortunate ways.  People are quite selfish and ignorant when it comes to using accessible bathrooms – nothing new there.  And my ability to transfer in public loos is waning, and that may mean that I can’t go out by myself anymore, and good god that sucks.  I knew it would happen eventually – Friedreich’s ataxia is a degenerative disease after all.  I’m just not ready.  So I’m gonna practice transferring more, and happily do leg exercises at gym and try to extend my ability plateau.

My two, insightful experiences may have had something to do with the different wheelchairs I was using, but really that shouldn’t matter.  The first weekend involved my power/electric chair.  I went solo to a cake show (Yeah, yeah cakes.  What can I say – cakes can be pretty and the icing or fondant can be twisted into awesomeness.  Also I really thought they’d be more samples.)  It was held at the ‘old’ Olympic Park precinct – so quite wheelchair friendly.  So my going solo shoulda been cool and it was, till I went to the loo.  I was waiting at the occupied accessible bathroom.  After the woman inside walked out, another woman appeared from behind me, walked past me and into the bathroom.  My shouts (“OI!  GET OUT OF THERE!”) did get her to come back out, at which time she ignored the fact she had pushed in front of me, and blamed her trying to use the wrong bathroom on the signage.   After having seen the responses of people looking for the bathroom, while I was waiting, I agree to an extent.  The hall for the bathrooms is a square shaped three walls, with the accessible bathroom on the side parallel to the hallway entrance, and the male and female toilets on each of the perpendicular sides.  The male and female toilets are not immediately noticeable, and because of the sign on the accessible bathroom “male symbol-female symbol-accessibility symbol-parent room symbol” there was the assumption that the accessible bathroom was the only toilet there and was for everyone, not just the disabled and parents with children.

After I had entered the bathroom and had transferred from my wheelchair to the toilet, someone started banging on the door, even after I had yelled “Occupied”.  The banging was more like someone was trying to shoulder the door open and was a successful attempt to open the locked door.  After 3-4 shoves the door burst open onto the back of my wheelchair then swung shut, and whoever it was buggered off.  Of course there was no call button, so I couldn’t get security or anything, so I then had to endure close to ten different arseho… ahem, “intrusions of my privacy”, as people kept opening the door, trying to enter.  One woman had opened the door with such force that it got caught in the back of my wheelchair, and I had to turn the power back on to move my chair.  Not the easiest thing to do, manoeuvring the wheelchair via joystick whilst sitting opposite/perpendicular to said wheelchair.

During and because of all that, my nerves were left frazzled, resulting in my physical inability to transfer back into my wheelchair.  I was having trouble trying to balance and put my weight in the right place, whilst trying to ‘swing’ my body from point ‘a’ to point ‘b’. As there was no help button to press to get assistance, I had no choice but to wait a few minutes to calm down and try again.  At least I didn’t end up on the floor.

My other experience was less extreme.  Went to a musical with some mates in my manual chair.  I got to the bathroom and my fondness for using my right side kicked me in the arse as the railing was set up on the left, and I’ve somehow managed to always be out with my mum (and she could help if need be)  or in my powerchair when the railing is on the left.   Always, oddly lucky of me, aye?  The railing at the cake show was on the right.  But this was on the left and I couldn’t figure out how to make it work.  And the radio was really loud, distractingly so.  I wouldn’t be surprised if I next get diagnosed with some kind of audio sensitivity.  Anyway, so major disorientation.  I called my mate Jackie on the mobile and got her to come in and help.  She’s a nurse and one of my best buds, so it was the least awkward option.  She ended up witnessing my transferring – I figured it out somehow, but my feet wouldn’t stabilise once I stood.  One foot was even standing on tip-toe, totally rigid.  I had to keep both hands on the railing so Jackie had to help with my pants.  Not the kinda bonding you imagine with your bestie.

So leg exercises are in my immediate future.  And people are real jerks when it comes to public accessible bathrooms.


Hits and Misses

Man, I hate summer here. It’s not just hot and sunny, it’s muggy – it’s like walking around in someone’s mouth.  I’m sure that sucks for everyone, but you add the ataxia on top of that and it’s all about stiff joints, sticking to what I’m trying to transfer off of, and my heart having a hard time.  By hard time I mean the slightest movement can set my heart racing like I’ve just sprinted 100 metres.  Just boo.  

I’ve had 4 training sessions at the gym so far, and I’ve enjoyed it so much that I think I’ll definitely be doing another month of that.  It must be hard for the trainer, I mean a neurological-physiotherapist came with me the first time to give him a few guidelines with what I can do, but he does still seem to be a bit cautious.  They’re 45-60 min sessions and by the end of them I haven’t actually worked up a sweat, I’m damn hungry, but not so sweaty.  The trainer was concerned that I’m not hydrated enough to sweat, but I don’t recall getting red in the face with salty beads dropping off my forehead since before I was in the wheelchair.  People don’t realise the amount of effort that goes into walking.  Also, on hot days it was pretty much me walking until I found a seat in the shade, whereas in the chair I pretty much wheel until I find shade and park (B.Y.O seat).  

The training is having an affect so far, especially in my arms.  I can lift myself easier and hold onto grab rails (propping up my body weight) for longer.  Turns out I’m loving the cables (for arm work and leg work), and boxing, well me putting on boxing gloves and punching a shield thing he holds – damned hard to sit up without support from the backrest, and swung my arms, and aim.  Most of the time my punches hit the outer edge of the shield-thing, and the first few times I almost hit him in the groin.  Now he does the intelligent thing of holding the shield at groin height so if I miss I’ll get his bicep or something.

Personality Quirk

There’s something a little wrong with me – other than the ataxia.  Well that might be involved, but I prefer to think of it as a personality quirk before anything else.  I cried during an episode of ‘The Walking Dead’ – s04 ep02 Infected.  I mean I really sobbed.  Was it because people were getting eaten alive by walkers?  Was it because two little girls had to watch their dad die?  No.  It was because Rick sacrificed living piglets to the walkers.  Ugh, I just couldn’t stand it.  I’m like that with most tv shows and movies.  Human characters come and go, boo-hoo.  Sometimes it’s worth a tear or two.  But you touch the animals?  Hell no!  I’m probably the only one who thinks the carnage in ‘Life of Pi’ would’ve been more tolerable with people rather than animals.  Zebra screams are not my favourite soundtrack.

Now, I’m the first to admit that my chances of surviving the zombie apocalypse are slim to none.  Well except for the one in ‘World War Z’ (the movie universe), even then really.  The world is yet to stop being a bitch for wheelchairs let alone those of us who need companions.  So, refusing to use live animals as walker bait is probably just another reason to add to my non-survivability, but actually going through with it and functioning through the piglet screaming just added to the amount that Rick seems to be dying inside.