It was really nice to see Auntie Sheila and everyone this afternoon and I did feel a bit more cheerful when I was out.

I think part of the blah down-ness might have come from the fact that I’ve not done very much of anything other than computer time, knitting and a bit of reading over the last few days.  I definitely couldn’t have been in the bureau this week.  Overdoing it at the weekend and then spending a lot of time at home recovering is not a good mix for me mental health wise.  I guess those two mornings a week where I’m in the bureau do make a difference to me after all.  I knew they did but I didn’t know it.

The stupidest thing about all of that is that out of the seven days since I came back from the regatta I’ve had three days where I’ve done propery stuff, two where I’ve done bits like go to sainsburys and only one where I have been at home all day.  I guess it comes down to what you’re used too and truly an hour out and the rest of the time at home, usually alone (days I went to sainsburys) isn’t great.  I’m used to MORE.   Doing and being MORE is what makes me happy.  But I couldn’t have managed MORE this week.

Is that what they call Catch 22?  I’ve never been able to get my head around that much as I’d like too.  Several people have tried repeatedly to explain it though.  And talking of that, I think that might be one of the next books I read its been sat on my shelf for years.

Time for a paradigm shift me thinks.  I’m not sure how I’m supposed to do that though.

This next week is going to be pretty busy I think so that should shake some of my blues away.

When I was talking to Auntie Sheila earlier we were saying about how there are some very lonely people in this world.

I would never have said that I was a lonely girl.  But then thinking about all this this evening and that conversation and everything that goes with it, maybe I am?  I’m never bored (or not usually) because I have plenty to do and plenty going on around me.  Maybe, just maybe, all of this comes down to a touch of loneliness though?

Something to think on.

It’s weird how the smallest things can just make you react.  And then afterwards you (or I in this case) stop and think and wonder just what it is that made you react that way.  Especially when there was no need to in the first place nor any sign that there might be.

When I got off of the train in Oxford today, Julie asked if she could have a word.

And that was it.  I started panicing.  As I was wandering over the platform and through the barriers, accross the concourse and outside the door where we stopped to chat I was thinking “oh my god what have I done wrong.”  “Argh I hope she isn’t too mad with me.”  “I’m gonna start crying if this is a big deal” “argh argh argh”.

It was nothing of the sort (she’d heard I’d been upset a few weeks ago and wanted to know if I was ok).  I’d had nothing to worry about but as soon as she “wanted a word.” I panicked.  It’s not the first time over the last few months that someone has said they need to talk to me or some such and I’ve reacted like that.  I don’t really understand why I do it but it seems it’s some sort of inbuilt thing, part of what makes me “Emma”.

Something that needs to stop.

I’ve been writing things to post on here and deleting them and writing and deleting and writing and deleting on and off all evening.

Ever since I upset several people with a post some weeks ago and then deleted it at my mum’s request there have been several things I would have written about or could have written about here and I haven’t. I guess I’m worried about upsetting people again. And there having been things I have posted here which hasn’t had all the details it would previously have had.

Then today I managed to if not upset than definitely shock and distress several people in a face to face situation. Neither time did I realise that would happen. The first time, with my blogging, I will readily admit that I was in the wrong. I (perhaps wrongly) don’t think the whole of the blame lies with me but I definitely played a huge part in causing hurt. Today, however, all I did was express my opinion and have it be very different to the “norm” opinion that everyone else had based on the same thing. I don’t think I’m wrong this time but knowing that others think I am is tough.

This is my entry and attempt at claiming some of it back. No more bad juju for me (I hope!)

We were sat having a drink and someone came over and said “you see over there? that’s so and so and she’s new, she has blah blah blah (personal family info) and then this happened and she became disabled.”

And on hearing it other than thinking that the person telling us probably shouldn’t have been I thought “oooh. that must have been tough and it could have been sooooo nasty.” With everyone else, however, it seemed to be a case of stop all the clocks, get out the black banners and mourning clothes, we better throw the girl a pity party.

As a life long disabled person i don’t know what it’s like to wake up one morning and suddenly have switched from TAB to PWD, I imagine it’s probably as scary as the very idea that I might wake up tomorrow and find the same has happened in reverse to me. Equally i don’t know what it’s like to be planning a joyous thing and then have things happen whcih could turn it into your worst nightmare (not referring to disability here). The first is something I can never know, the second something I hope I never know.

But what I do know is that pity doesn’t help. In my opinion, pity makes it worse.

So everyone else sat there and muttered things about her being too young for that to happen (I was the youngest by probably 30 years in that group of friends) and how scary it must have been and blah blah blah how sorry they felt etc.

I, of course, stuck my foot in it to a certain extent with my comment that actually I didn’t feel sorry for her, I didn’t see the point. I said I agreed that it was one of those suck your breath in slightly “oh god” situations but that I thought she was lucky because she could have had it much worse as a result (or she could have died.) What \I didn’t get the chance to share/say is the fact that acceptance and moving on help a lot in a friendship or support situation. Get to know her/me/whoever as a person and ignore the disability. It shapes it does not confine and it only in some ways defines.

Obviously, I would never go up to anyone and say “hey that medical situation you found yourself in must have been really scary you lucky, lucky, thing, you.”

But how I wished in that group of supposed disabled people (most of them are older generation who’ve had strokes or aging related disabilities) I’d had my people there who got that you know what, disability isn’t a bad thing. And how I wished so called professionals who have done disability awareness training didn’t feel the need to share confidential information and identify us by our disabilities. Because saying something like “that’s Em with CP over there” really sucks.

I don’t like feeling like I’m in the wrong. I’m not in the wrong here (I think)

And I like it even less so when I actually am in the wrong.

A couple of people I know have briefly met one of my neighbours a few times - times which had nothing to do with me.  The result of that, however, was that when I first moved in here they warned me about him - said I would need to be careful around him and made sure I knew certain things about him - things that sort of made it seem like he is not a good person.

Well, appearances can be deceiving.  Because he’s not someone I’d spend a lot of time with but he’s a perfectly nice guy, he’s approachable and he’s helped me out a few times.   We stop and say hi and a bit of small talk when we see each other.  And that’s more than I do with any other of my immediate neighbours.

That’s something I’m very grateful for as I sit here writing this.

There’s been a lot in the news lately about Blue Badge Fraud and about the badges being stolen and all sorts of stuff.   And I’ve spent most of yesterday and up until half an hour ago with a pit of dread and a sinking feeling in my stomach.  Because I had lost my blue badge.  I found it out before Dad and I went to Tesco.  We got to Tesco and I no longer had it.  Shit.

I was beginning to think if my carer didn’t find it tomorrow (there being one place left to look and it not being somewhere I could get) I’d have to jump through all six thousand hoops involved in getting a replacement ahead of schedule.  Including getting a crime reference number from the police.

It wasn’t on the path outside here, in my Dad’s car, my bag or on the side where I’d put it ready to go shopping, or on the floor by it.  It was lost.

I’d begun to suspect that it had been dropped outside and that someone had picked it up and kept it - because that’s what has been happening a lot lately - with blue badges exempting people from the Congestion Charge in London and giving various other benefits they’ve been selling for up to £200 on eBay.

Anyway, I was - thankfully - only partially right.  I had dropped it on the grass outside.  But my neighbour - the one with the problem, the one I was warned to avoid? he found it and he brought it back to me.

I know there are people out there who have the same issues he does who aren’t nice people and who I should probably avoid - I’ve met a few of them.  He however makes me glad I gave him a chance and looked past the problem.  And thinking about it, really, his problem, is just another form of a disability (although I’m sure he wouldn’t agree with me on that).

I think most people with visually obvious disabilities have probably experienced the thing where people off the street or other people you’ve just met come up to you and tell you how by simply living your life and doing day to day stuff you are inspirational and a hero and all that other sort of general crap.  And often they go on to mention that they “could never do it”.

It’s a perspective issue.

They see the disability and see it in comparison with their own lives.  So, whereas from my perspective it’s no big deal from others it seriously is.  They find it hard to come to my point and I find it hard to accept theirs.

Because of the frame of reference from which they approach it.

I’m also sure that most people have had one of those conversations where you’re chatting with a friend and the subject of another person you both know comes up in the conversation.  Maybe one of you hasn’t seen them for a while and asks the other if they have, do they know how they are, that sort of thing.

I had two such conversations with two friends about two different people over the last sort of six weeks.

Both times my friend has had an observation about the person we were talking about and it was something i’d never seen in that person before for example, a bit lacking in confidence or easily discouraged or “glass is half empty”.  And I was sat there astounded.  I’d not seen that before but as soon as they said it it made so much sense.

But from my perspective it wasn’t there.  Even though it was right in front of my face.   That person could do with being given more encouragement or whatever.  And knowing that, seeing it from another persons perspective has helped me to try to be a better friend.  To try not to take everything at face value.

People do that to me.  I try not to do it to people I see on the street.  It’s time I stopped doing it to my friends.

Someone made a pretty big mistake today. One that affected me pretty badly.

But then took the time to put there hands up to me and say “Emma, I’m really sorry.” and to admit to me that it was their fault. He looked me straight in the eye and went “I spoke to Julie and she told me she’d got you on the train but I just forgot to come help you off.” He told me he shouldn’t have forgotten and that it wasn’t good enough.

By the time I had been to Reading waiting for a train back and gotten to my sleepy little town he’d arranged for a wheelchair accessible taxi to meet me (no mean feat in my sleepy town where they are like gold dust) and it was there waiting. And he’d arranged for it to be paid for by the train company.

I live literally ten minutes walk from the station. I told him it was pointless, no need. But he was insistent that I took the taxi home. He stood there saying “it’s my fault” and variations on “sorry sorry sorry” as the driver clamped me down. And he told me that he wished he could do more to make it up to me.

I went “actually, you can. These things happen stop apologising and shut up!”

We laughed and off the taxi went.

I was an hour and a half or so late getting home. And I will complain about that. but more so about the fact that on that train type the “emergency call” buzzers are set in the ceiling and as a wheelchair user I can’t reach them when I need them.

I really, really, respect the fact that he had the nerve and the confidence to admit to me. To say that he forgot and that he’s sorry. And he meant it too.

I’ll tell the train company that.

And I’ll tell them about the train manager on the one I got stuck on. I never saw her until after I should have left the train. She got me sorted out and off of the train in Reading. And even though I was then with Gordon (who does journey care there and who I know well) and I was fine she insisted on waiting with me and traveling to my sleepy station with me to be sure I was ok. Her shift was over. I never got her name but hopefully if I tell them the train times etc they will know who it is.

Gordon waiting with me the entire time I was waiting to (they usually go and do other work). He told me it was great to see me but he wished he hadn’t. We laughed.

With both of them I insisted I was fine. She could leave me and as long as he came back so could Gordon. They refused and they stayed.

None of that makes what happened today okay.

But it goes a LONG way towards helping.

Particularly the person brave enough to own up to forgetting and to apologise. I’m annoyed but I also have huge respect for him and his honesty. I don’t think I could do that.

I feel contrary lately. I can’t really explain it, I just do.

Or maybe indifferent would be another way to describe it. Perhaps both contrary and indifferent, I don’t really know.

Being disabled and using a wheelchair frustrates me at the moment. But it isn’t the fact I’ve got Cerebral Palsy and can’t walk that causes it.

It’s the friend who likes to comment on a regular basis that I take “really a lot of medication” - I take two daily meds and two pain killers (two different sorts, I mean) as and when I need to. I need those medication; they’ve beneftted me a lot. But it has been mentally hard for me to accept that and to take them. I wish she would shut up. For the benefits they give me I am very grateful; and I’m also grateful that it is only two meds. As one of my doctors once put it - I could function without most of my meds but they (muscle relaxant and pain killers) greatly improve my quality of life.  I’m no longer sure I agree with that but I do understand where he comes from with that quality of life statement.

It’s the colleague who goes “oh can’t you do that.” or “I never would have thought you’d need help with THAT” when I ask for help with small things.

It’s being told I’m “imagining things” when I express how much I feel that lately people are seeing the wheelchair and not the girl in it.   And more so when I say that a few people around me tried to make a big deal of my wheelchair and make people notice it.  Maybe I am imagining it, I don’t know.  But what I do know is that is how I feel - and being told I’m imaging it is not helpful.  It just makes me feel worse.  The other thing I do know is that I am “so much more than ‘that girl in the wheelchair’” as I wrote on my about me page but at the moment I do feel that the wheelchair is all people care about.

It’s being told that I’ll “have to learn to accept help” when I answered Thank you but no when offered help.  And it’s the patronising “the help might not be offered one day and you may really need it so you should accept it now” when I explained that it was both easier and safer for me to do it myself.  Maybe that might make me the little crippled version of the boy who cried wolf one days in the future - but I’ll take that risk.

It’s the comment that I enjoy using the internet because of my wheelchair - no, I enjoy the intrawebs because I just do.  Wheelchair be damned.  The only affect it has on my ‘net time is that it gives me somewhere comfy to sit.  (as a side note however, huge props to that particular person for being convinced by my explanation of that AND apologising).

So it’s not the CP and it’s not the wheelchair.

It, once again, comes down to the way others view me and my chair.  They way they react to the “crippled girl”

And how it differs from who I am, how I view myself and how I react to my disability.  There we come again to another reason why I feel that I’ve lost confidence lately.

Oh and as a slightly unrelated side note, I had great fun shocking someone on friday.  They commented about how a do we’re going to doesn’t have a license but you can “bring a bottle” and how a lot of people going can’t drink due to medication.  When asked if I could I replied “well the doctor said i’d need to avoid it and I asked what that meant.  we negotiated and I’m allowed one or two drinks.”

Let’s just say she was a little shocked.   C’mon doctors aren’t gods after all, there word isn’t law… and I was at uni still when I started the med.  These meds are likely life long (some of them) and for me never to have the odd vodka again is unrealistic.  I’m disabled, not dead.