>Bottle

>This afternoon I wrote some cards then took them to the post office.  It was my one big job for today after a day of waiting in.  As I headed towards the back of the shop and the post office, I heard my name called and my Mum walked up behind me.

After a couple of minutes she suddenly goes “What’s that bottle on your chair?”  She was stood behind me, looking down at the back of my chair.

I had no idea what she was talking about, but figured i must have picked up a bottle off the ground somewhere.

Then she reached down and picked off my teeny tiny little bottle of passionfruit home fragrance oil.

It’s not the first time I’ve gotten stuff caught on my chair and carried it off with me.  And some of the things I’ve done it with before are small.  Usually the things have either fallen on my footplate (I’ve sent a couple of things – chocolate and soup if I remember – flying in shops not been able to see where they are and found them when I got home) and wrapped around my wheel a little – did that with a scarf once.

But it is actually the smallest thing I’ve ever done that with and also on the most insecure part of my chair.  Plus the route from my house to the post office involves a camber that I hate, a pretty steep up hill and a down hill too.  For some reason I’m always surprised when I have things like that happen.  However this has surprised me the most.

>Fluoxetine

>Last night and tonight I’ve tried to write an entry about going to the doctors and the dentist yesterday.  I’m really not doing a good job of getting down what I want to say.

So, the bare minimum  

I am back on antidepressants (fluoxetine) but at half the dose I was on before I decided not to take any meds last May.  I am sanguine about that.

I am not going back on muscle relaxants (baclofen) as I was never sure they did much for me.  My GP also commented in response that she’s not convinced baclofen does much.  This was never actually up for discussion, I just told her that I’d stopped both meds and didn’t want to go back on it.

I really must comment here how much I appreciate honest and people who take the time to explain things and are open and friendly etc.  Oh and how sometimes it’s harder to deal with people who are nice.

We were discussing related things in a plan of sorts and she told me she knew I could do this, that she had no doubts at all about my determination once I got started.  I nearly cried.

>Explaining Disability

>I went straight from the bureau to meet a friend for a swim at lunch time.  It’s meant to be a regular weekly thing but we started in January and I think it’s probably the 4th time we’ve been so it’s not very weekly just yet.  But soon, I hope.

After we’d been in the pool for a while three or four other PWD came into the pool, people with physical disabilities but also some learning disabilities too.  I know one of them (and one of the carers) vaguely through the Friday swimming group I used to go too.

They were still in the pool when we got out but there was a little girl and her mum in the showers when we were in them.  I’d say the girl was 2 or 3.  So not good at judging ages though.

A while later and showered and dressed I saw said mum and daughter over by the mirror drying hair.  And they saw me.  As I approached on my way to the coffee shop and a much needed sandwich I heard the mum start to explain how there are some disabled people who swim on a Monday.

I slowed down a bit so I could hear part of the explanation.  She explained how some people have arms or legs that don’t work properly and that’s why I was in my chair and some of the other PWD had carers helping them or walkers, because we need extra help.  And she told her daughter it was called disabled and it was OK, it  meant we were just different.  They were lucky, she said, because they had arms and legs that work.

I didn’t hear the entire explanation as I couldn’t hang around to listen without it being seriously obvious.  And I didn’t have the nerve to tell her how happy I was to hear her explaining and how impressed I was by the explanation she gave.  I wish I had.

As I went up the ramp and looped back around past the top of the stairs and into the coffee shop I heard a little more (they were by the bottom of the four or so stairs) of her explanation – that there were many different reasons why but it was called disabled.

With all of the Cerrie Burnell related kerfuffle there was lately my main thought has always been that it’s not disabilities that scare kids but parents who are scared of the disabilities themselves.  So it was refreshing to see a parent not ignore it, not panic, but simply explain it.

>101 in 1001 – Item 46…

>

Investigate getting a cleaner rather than carers

… has been completed!

I’ve not had carers in about five, six weeks now.  And I friday I finally got cleaners set up to come instead.  They’ll be starting not this coming week but the week after and will be coming once a fortnight.

I’ve very much enjoyed not having carers as it’s meant not having to be tied to certain times of being here etc.  The only time I’ve regretted not having carers was the Monday when the cold I just had was at it’s absolute worst.  Mostly because I didn’t feel well and wasn’t up to making dinner and it was a day when previously I would have had carers.  It was a totally psychological thing because even if i’d still been having carers there were more days a week they didn’t come than they did.  And my Dad dropped me dinner in and it was fine.  Also I probably would have found having a carer stressful that day as I was a poorly girl and the carers who were my regulars when they stopped coming had a tendency towards panic.

Anyway… I wouldn’t say I am looking forward to having the cleaners start but that I am apprehensive.   At least at the moment it looks as though there will be a few niggles and where I did think this was the right thing for me now I don’t know.  But of course I won’t know for definite until they start coming and have been a couple of times.

I’m probably just borrowing trouble.

>101 in 1001 – Item 46…

>

Investigate getting a cleaner rather than carers

… has been completed!

I’ve not had carers in about five, six weeks now. And I friday I finally got cleaners set up to come instead. They’ll be starting not this coming week but the week after and will be coming once a fortnight.

I’ve very much enjoyed not having carers as it’s meant not having to be tied to certain times of being here etc. The only time I’ve regretted not having carers was the Monday when the cold I just had was at it’s absolute worst. Mostly because I didn’t feel well and wasn’t up to making dinner and it was a day when previously I would have had carers. It was a totally psychological thing because even if i’d still been having carers there were more days a week they didn’t come than they did. And my Dad dropped me dinner in and it was fine. Also I probably would have found having a carer stressful that day as I was a poorly girl and the carers who were my regulars when they stopped coming had a tendency towards panic.

Anyway… I wouldn’t say I am looking forward to having the cleaners start but that I am apprehensive. At least at the moment it looks as though there will be a few niggles and where I did think this was the right thing for me now I don’t know. But of course I won’t know for definite until they start coming and have been a couple of times.

I’m probably just borrowing trouble.

>Riverdance and Variety Lives

>I’m feeling rather behind with two shows I’ve seen to blog about.  And as I’m going to a third tonight I thought I better just quickly blog about them.  Because having three shows to blog about would be too many!

Riverdance

Mum and I went to Riverdance in Oxford at the end of February.  It was the farewell tour.  Although I must say I don’t actually believe that’s the end of Riverdance, I’m sure there will be another tour in a few years as a kind of comeback or some other new show that is similar will launch.

It was the first time I saw Riverdance (I saw Lord of the Dance a few years ago and we hope to go to that again later in the year).   I loved it.  There’s something very special about all those people in lines flying all over the stage.  They are some very talented dancers in that show and I was blown away.

I was also very surprised by how different it was from Lord of The Dance.  I had assumed that they would be different in name alone.  The biggest difference I noticed is that there are several bits in Riverdance of just music.  And that the musicans are on stage so you can watch them both when they are soloing and when they are accompanying dancers.  There were also a few bits of other sorts of dance too.

I’m tempted to say I preferred Lord of The Dance because I wasn’t overally fussed on the bits of just music.  But it’s been so long it’s not really comparable.

Variety Lives

This was a show the other week at the arts centre here.  I went with a friend from Creative Writing and a few of his friends I’d not met before and sat slightly in front of them.  So I was kind of with them, kind of not.

There was a compere who was a comedian and did jokes as well, he also did some musical comedy.  I really liked him.

I really didn’t like the first full act, however.  It was an older scottish comedian and he just basically wasn’t funny.  When you go to comedy I’ve found that people ask afterwards what the jokes were about.  I repeated one of his jokes to my mum and a couple of other people (separately) and everyone just went “What did he mean by that?!” and no one thought it funny.  Also the wheelchair space I was in was right at the front and he kept making eye contact with me which was a little freaky.  I looked him up on google and apparently he was really popular and won some perrier awards years ago.  So that’s kinda sad.  My friend reckons that the guy couldn’t remember his material and was drunk but I don’t know.

The second act was a singer and a pianist accompaning her.  She was good but not the sort of thing I would have chosen to see.  I like some of the songs she sang but it was a cabaret type act, good for hanging out in a hotel or whatever not for a show… for me at least.  But she could sing and I did sort of like it.

The final act was Hattie Hayridge (she played the female Holly in Red Dwarf) and she was the reason we had gone.  It actually was worth going out for her alone and she rocked.  I really enjoyed her set and she really made it worth having gone out that evening.  I would probably describe her act as irreverantly funny and somewhat self depreciating.

>Oh to be anonymous…

>Sometimes the fact that I’m not an anonymous blogger is really difficult.  Usually I manage to describe situations to a degree which I feel makes my point but trys to protect my privacy and the privacy of the other people involved.  I think that’s particularly important when writing about negative events, things that annoy or upset me etc.  Obviously I don’t always succeed.

On Monday, yesterday and today people said things to me which left me feeling very much like they were talking to me like I was a child.  And each time I answered and then got annoyed with myself for not refusing to answer and picking them up on the way they spoke to me.

I’ve just written and then backspaced out an entry detailing what happened on Monday.  I really want to share it but I’m feeling maybe a little paranoid and can’t explain the he said she saids of it without potentially making it obvious to the other person involved if they were to read it that I’m moaning about them.  I’d like to think they would never read it but given that several people read this who I never expected would do so I’m not comfortable going there right now.

So right now as well as those frustrations I’m also feeling frustrated about the fact I’m not anonymous.

>Access thoughts, things people say etc

>Someone said to me yesterday that they thought our town was pretty good for a wheelchair user.  I suppose it is, I’ve not thought of it like that for a while.

And then they mentioned another town about 8 or maybe 10 miles away saying they “wouldn’t want to go there in a wheelchair.”

To which I said “yeah but you’re not in a wheelchair”.  I find comments like that to be somewhat annoying.

I have a good friend whose parents live in that town, when she is in this country I visit her at their house, I’ve been loads although not into the town itself for some years.  I can’t say I remember it being particularly terrible in/for my chair.

I tried to explain that it doesn’t come down to whether it’s easy or it’s difficult.  The choice and what it comes down to, ultimately, is whether or not I want to do something.  Because what the choice really is is do I do something which may not be ideal in terms of access or disability issues (and which potentially may not be as accessible as advertised in some cases) or do I decide to give it a miss and not take part.

To me, ease rarely comes into it.  Or “not wanting to do something in a wheelchair”.  Because the other point I tried to make was that being in a wheelchair is and always will be all I ever know.  And I have parents who taught me not to let it stop me as far as possible.

Examples I used in this conversation include another local ish town.  The last time I went there I thought it was a nightmare for my chair.  But that was the day of a dear friend’s funeral and we were killing time.  The combination of the emotions of the day, a new place, not wanting to go far from the church etc probably wasn’t a good one.  If we went back and I went round the town more I may have different thoughts on the place.  Or I might not.

Oxford was another example.  When we go to the theatre I go in my manual chair and the old city streets were a bit irritating.  Usually I go in my powerchair it handles the potholes and not quite level paving stones etc much better.  I said to mum afterwards that if someone said to me “you can go to Oxford and Reading but only use the powerchair for one of them and have to use the manual for the other” I’d always use the power in Oxford and the manual in Reading.  

Really I think “I don’t want to go here in a wheelchair” would ever come into consideration when it came down to deciding which wheelchair to take or if the choice was between going to X or Y place and there was nothing else that had a major influence on the decision.

But almost always the decision is if I WANT to do something, am I going to enjoy it, can I afford it etc.  Obviously there are times when access will stop me or like Sunday when I’ll get there and it won’t be what I expected.  But that doesn’t usually bother me because I can be pretty creative ;o)

>Everything Still Remains The Same

>Weekly check in for the weight loss – same weight as last week.  I knew that had to come soon as I’ve really been doing what feels like very little in terms of changes and I’m not disappointed.  Particularly as I have been getting over my cold still.  I’m better but still a bit congested and coughing at times.  Nowhere near as badly as I was although people have been commenting that I have a bad cough (they should have heard me last week!)

I did wheel myself a lot in my chair when we were at the half marathon on Sunday.  Unfortunately some stupidly steep ramps and one point where my dad was flapping that we needed to be faster and started pushing me and wouldn’t stop when asked meant that I didn’t reach my goal of wheeling myself whenever it was needed/possible/feasible there.  The fact that the ramps stopped me is a fact of life although I will raise that point with them as safety issues.  The second really frustrates me as to me there was no need to be concerned about how fast we were (dad was worried they were going to shut one of the access points and in particular the wheelchair accessible one) but now I know what his concern was it is still frustrating but more understandable.  And I’m not overly slow wheeling my chair.  Not unless you compare me to the wheelchair athletes who did the half marathon.  But still nothing I can do about that now…

>Yay Soph!

>I just tweeted this but what the hell, I’ll blog it too.

Soph completed the half marathon today in 2:56:52!!!  FANTASTIC for the girl who couldn’t run a mile when she signed up.

I’ll get photos up soon but for now, some more stats

Runner No.: 3371
Position (Overall): 6534
Position (Gender): 2045
Position (Age group): 1218