My brother and his girlfriend move in together yesterday.  And today they had a housewarming BBQ.

The house they’ve moved into is an actual house - with an upstairs and a downstairs.  We’d thought the upstairs would be “out of bounds to me” - I used to climb stairs on a regular basis as up until I went to uni I had an upstairs bedroom.  And even then until 2002 I would be climbing stairs to get to my bedroom during the uni holidays.

Then in November 2002 my parents moved into their current house - which is a chalet bungalow.  And I got a downstairs room.  I first saw the house that Christmas and I went upstairs twice to see it.  I’ve not been up their again (and my sister actually thought I’d not seen the upstairs at all).  Other than one incident not long after I left uni (four years ago) involving a broken lift and me getting myself down some stairs, stairs have been something other people did since 2002.  I’ve done the odd step (there are two into my parents house).  But stairs?  I don’t do stairs.

Or I didn’t until today.

I wanted to see the upstairs of my brothers house.  I’ll admit I wasn’t sure I still had the ability to climb them it being so long since I did.  Mum didn’t think I could and didn’t want me to try.  Telling me that is kinda like a red flag to a bull and before I got there I had wondered if it might be possible.  So that was it.

But I was in the kitchen with my brother and we just went and starting going up the stairs.  On one side there is a bannister, on the other a bannister part of the way and then a wall.   I had wondered about going up on my bum - but I walked!  I held on with one hand and held on/lent on the wall with my other.  Ben walked behind me.

I practically flew up those stairs.

Just me and the walls/banister no help.

I couldn’t believe how quickly I got up them or how easy I found it.

Had a brief look round the upstairs and then sat on their bed for a while catching my breath while they greeted more guests and showed them round.  Then Dad came up and helped me into the bathroom which I also managed without help (and we hadn’t been sure I would even with help).  Yay for small bathrooms which mean the loo is right by the wall and the bath is right the other side and on the side i need help on the most.

Dad helped me walk back to the top of the stairs and after going down the top two, I sat on the top stair and worked my way down on my bum.  My favourite floaty blue skirt might not have been the best choice for stuff to wear for that.

I was breathless after my adventure but very pleased.

Welcome back, stairs.  I can’t say I’ve missed you over the last six years.  And I don’t think we’ll be having the relationship we had before.  Because I have no regular need of you now.  Just a now and again when I visit my brother and need the loo will have to be sufficient for you.  But it is nice to know that I’ve still got it.

Oh and the house is very nice and the BBQ was fun.

These last few days have really left me with a feeling like I want to throw a right strop, scream out “I’m sorry that me and my attitude and the way I think, feel and act about things are annoying you.  And I’m really sorry that me and my disability are causing you problems.  I’ll just take myself and my CP and go away somewhere where we are liked!!” and then stomp off to a corner somewhere.  Possibly something about “And you think you’ve got problems” should also be thrown in if I were being a true stroppy cripple because I don’t actually think I did cause any real problems.

Only I don’t think the people I want to scream it at would get that I was being sarcastic.  And lord only knows how much I would hate for them to think I was actually apologising to them for the fact that things weren’t great for me access wise and their attitudes really didn’t help me either.  Because it’s not my problem and I wasn’t the one at fault.

But it is really tough.

still, as they say - this too shall pass.

I’ve been thinking for a while that it might be useful to compile a list of CP bloggers.  Well, actually I’ve been thinking a list of disability resources would be the useful thing but a list of CP bloggers would be a good place to start.  I know quite a few bloggers with CP or parents who blog about their CPer kids.  And I can add those to the list obviously (when I start writing it).  But if you have CP and blog or you blog about CP please can you leave a comment here with your blog address.  Maybe a bit about you too if you want.

And yes, before anyone asks, I did just read the CFer blog roll call over on Nate’s blog.  But I swear I had this idea ages ago, just reading all the comments and bits of peoples stories about their lives with Cystic Fibrosis was really interesting. and made me go “do it now”*  I have always had a bit of an interest in CF though - I had two friends with it.

*that and my blog was crying out for an update!

I had a pretty spectacular fall about an hour ago. Definitely the only full on fall I’ve had this year I’ve lost my balance transfering and ended up not quite sat properly a few times and I’ve also ended up standing then losing my balance and ending up back in my chair without meaning too a few times. Those count but don’t count because I have caught myself on furniture or door frames or whatever.

Today I well and truly lost my balance and went. I’m not really hurt but I’m sore and I’m pretty sure I’m gonna be black.

It’s probably not the worst fall I’ve ever had; I’ve had worse thats for sure. But I managed to pull my Dad over with me (I was walking holding his arm) and I ended up half on the step, half off, on my back with my Dad on top of me. He caught himself though so he didn’t actually land on me. So it’s pretty scary.

And there’s lots of emotional and mental things that go along with it that have to do with the fact I scared my Dad by falling and he yelled “oh bloody hell” a few times as I was going and scared me and I thought he was mad with me and I was just crying and saying I couldn’t help it. And it’s all stupid and basically fine but it’s tough because as much as he stood there and kept saying that he wasn’t yelling at me I couldn’t handle that conversation then and it made me cry more. It doesn’t help that I’ve pushed myself a lot mentally and emotionally this week and although I’m slowly clawing it back today, I am a little low on mental spoons and maybe fragile.

I know I scared him and he scared me and there was no blame or whatever. And he wasn’t yelling at me. I know that. Rationally. But right now I need to regain my equilibrium. Hopefully when I see him tomorrow we can chalk it up to the “straw that broke the camels back.”

I haven’t actually looked to see if I am bruised (based on what I did and how I feel I fear I must be) and physically I’m pretty much fine. But I’m shaky and tired and…

Falls suck.

ETA: you know how I said I assumed I was bruised and how I landed half on the step, half off?  I got one really narrow line of a bruise going alll the way across my bum right where I hit the edge of the step sort of like i’d been lashed… i’m really stylin’!

And with more time to consider things, it all just comes back down to how people react.  If people are calm and all when I go flying like that I can stay calm but if they make a fuss I tend to freak… sort of like a child.  Of course, pain in this case probably would have meant tears regardless BUT it’s an interesting point.

Dear Starbucks,

If you must have stupid banner things outside your shops then you must (but only if you really, really must). I suppose that was kinda ok. But for the love of god either leave them to wave around properly in the wind or weigh them down properly. You know, doing it so that the god damn weight doesn’t get caught by the wind. In fact, do it so there is no chance in hell of that happening would be your best bet.

Because when those banner things get caught by the wind and then sent by the wind in your wheels and the weighted part hits you in the thigh? That hurts like a bitch. And continues to do so for eight (and counting) hours afterwards.  Gives a lovely black look to the thigh too.  Sexy, that.

It’s not exactly rocket science people!!

No love,

Me

Dear CP,

I know that it times of stress, cold, or pain you like to spasm. And that you like to do so when it comes to things that surprise me and make me jump too. Most of the time, I understand that, we’re cool.

But if I ever have a freak accident with a starbucks banner again (or, indeed, any banner). Give me a break from the whole spasm/clonus/extension thing, please? Making my arm spasm onto my joystick just made things worse.

I understand your need to make me spasm, I really do. But come on, CP, there’s a time and a place for these things. And that just really wasn’t it

lil bit of love,

Me

I made an off hand comment to a group of other volunteers in the bureau this morning.  It bombed.  The conversation started after someone said they hadn’t mentioned a specific thing to their doctor but assumed they would have picked up on it.  I can’t remember the exact comment but it was along the lines that doctors aren’t the be all and end all of everything medical and that their knowledge can be lacking. I am feeling particularly anti the medical establishment at the moment and may have used the term “useless” in there somewhere.   Everyone else disagreed with me

CP is something of a case in point when it comes to that statement.  CP is a chronic condition which is defined as “not unchanging” which basically means that it’s not degenerative and it won’t get worse but that the aging process may affect a CP-er sooner and greater than your average TAB person.  It’s incurable although treatments are improving.  CP-ers have a good prognosis as described in this article (which is from wikipedia)

Note the following:

in most cases persons with CP can expect to have a normal life expectancy 

I know three or so people who have CP and a whole host of other medical issues; some of which are pretty serious.  I am not including myself and my depression dx in this example.  None of their issues are related to or influenced by the presence of CP.

One of those people recently had a long hospital stay and spent some time on a ventilator.  When we spoke recently they were extremely upset.

Why?

Because after living with CP for 28 or so years, some doctor at the hospital told her that CP gets worse and worse, is degenerative and people die of it.  They told her it was the same as Muscular Dystrophy.   They specifically said that “it’s what CP does.”
She wanted to know if I ever knew that.

That doctor is very very lucky that I just heard about that in an MSN conversation.  And I really hope I was able to convince her that it wasn’t true and the doctor didn’t know what they were talking about.

Having an incurable condition is not the end of the world.

Having an incurable condition does not automatically indicate that the person will get worse and deteriorate.

Incurable does not equal terminal.

But I could cheerfully “terminate” the medical staff who were ill informed and  had no people skills and told my friend that.

I hate February.  I have done for a long time.  But this year I was determined that “February is Fab” and I would do loads of fun things.  So far, however, not so much.

The Lion King on Sunday was absolutely amazing and it was really fun to see Trudi and go out to eat and catch up.  And I always like a wander around London, particularly the bit we were in.  We were headed back to the station about six ish and I have to say the sky line in the dark was spectacular as always.

It could have been a wonderful day.

It was a wonderful day.

But I hate the fact that I had to wait 15 minutes for help off of the train and I got freaked out about the possibility of ending up in the wrong place.

And I hate the fact that the person sat behind me in the theatre found it appropriate to moan at me that my wheelchair blocked her view and then to huff at me when I said that I wasn’t going to go sit in the aisle.  I paid for that wheelchair space, I bloody well was gonna sit in it.

And I really, really hate that it took me finding that man collasped on the ground and kicking up the biggest fuss ever before he got any help.  I can’t really describe how absolutely bloody terrifying that was.   I’m glad I found him and eventually managed to get him help; he’d been there an hour by the time I found him.  But I’m still freaked out about it now.

Most of all I hate the fact that, as great as the day was, as great as The Lion King was, no matter how much I adored the costumes and was blown away by the music - all of that, all of that wonderful stuff.  Is almost overshadowed, hidden even by all the disability related crap and scary stuff that happened.

I’ve been ill since Tuesday night.  I think it’s to do with how stressed out I got Sunday/Monday.

I don’t hate my CP; I never could.

But for the love of GOD, people, why can’t I have a grand day out doing something I’ve wanted to do for years (as this was) and just be normal.  The problem is society.  And always has been.  Disphobia, a lack of responsibility and ableism.
So thank you, society in general and staff of Waterloo train station in particular, for overshadowing my trip to the theatrre.  And for making scaring me, making me ill.

Last Sunday was the worst society hates disability day I’ve had if not forever than for probably at least in the last five years.   I have to try to leave my anxiety behind now, try to stop feeling nauseaous.  It’s not easy.

But I have to try.  They ruined my week, I’m not gonna let them ruin any more.

I really, really, really hate it when people use the term “neuro typical” in relation to their non CP-er kids.  I’ve also heard that term used to describe people who aren’t autistic.  And basically, it’s a term I hate.  What exactly is “neuro typical” anyway?!?!  I don’t think there is any such thing,

I’ve just found a term I hate more than that though… “neurodevastated.”  used in relation to neurodegenerative diseases and severe CP. Talk about ableist and disphobic!

Excuse me while I go throw up.

I’ve had enough.

Whilst my parents are in New Zealand I’m having extra support.  And it’s driving me crazy.  Crazy I tell you.

Almost all of my carers have been late - and only one of them bothered to let me know.  On Monday the carer was 45 minutes late!  She commented that I didn’t look happy.  I told her that I was pissed off and had better things to do than waiting around for her to show up and in future to make sure I was told.  She told me that she didn’t feel well and all about her stress and family problems.

I’ve heard repeatedly how much they hate their jobs.

I ate half of my dinner one day and discovered I’d been given southern fried chicken that was raw in the middle (how I didn’t get food poisoning I don’t know).

And one saw fit to tell me that she went to school with someone with CP and she thought it was “really very sad.”

It’s always kind of been the thing that you don’t complain about these things - my mum frequently tells me she thinks the agency are good over all and it could be worse so leave it.  And when I do speak to the office staff about things the usual response is “that’s not like so and so” or “everyone else really gets on with X” so I gave up on them.

I was thinking about it earlier this week.  If I was at CAB and I told a client that I felt their problem was really sad or that I hated my job or went “you think you’ve got problems… try this on for size” all hell would break loose - and rightly so.

So why is it “acceptable” for carers?

Well, not any more it’s not.

I just sent an e-mail to the director of the care agency telling her I’ve been having issues (listed some of them briefly) and asking her to call me so we can discuss the matter.  I’d have called her myself but I didn’t want to go through the useless office staff.  And also, this way it’s on their bill and judging by how much they charge they can afford it better than I can.

10,000 word long spam comments left on my blog (yes, I cut and pasted it into open office and checked the word count, shoot me).

The fact that when helping with the health and safety audit at work we came to the question on potential tripping hazards Judith turned to me and went “we’ll give that question to She Who Likes To Fall.”

When the guy from the journey care booking line went “so that’s a booking for you and your electric wheelchair to travel to Oxford…” as though my powerchair was another person.