You Know You’ve Got CP When…

…you don’t know whether to post an “argh terrible disaster it’s all going wrong crisis.” status update or a “oh wow this just happened I rock” status update – and the two things relate to different parts of the same incident.

So it was something like 11:30pm last night. I’m on the computer and beginning to think about bed but I’m waiting for something on here to finish. I decided to leave it on and go to the loo, start getting sorted.  I’m in the hall, almost to the bathroom when something happened to my manual chair and not only wasn’t I moving but it had dropped in one corner and I was half in and half out the chair.

My powerchair is also in the hall so I try a couple of times to get myself up but I can’t. I have to ring my parents. My Dad answers and it turns out I’ve woken him up. He comes down and lets himself in and I’m really surprised that I didn’t fall out in the ten minutes it took him to get up and get here. I’m sore from having my leg in a position it doesn’t like and that triggered a ton of clonus (which I rarely have any more). Whilst I was waiting for him I’ve had a better look at my chair and I think one of the castors has snapped all the way off as it’s in a really wrong position.*

Dad tries to help me up and can’t. I say I think I’m going to have to get on the floor but he tells me no because he won’t be able to get me off the floor and we’ll have to call an ambulance. He folds my walker and manages to get it round in front of me but even with that I can’t stand – it’s too low with the way it’s fallen and I’m slipping more and more forward (and out) with every attempt.  Can’t bring me my powerchair to try to get into as it’s behind me and my hall isn’t wide enough to get it past.

It’s gonna have to be the floor. Which we’re both thinking means a call to 999.

I did a semi controlled fall to the floor. Dad grabbed my arm to help me control it as much as possible which is probably the only reason I didn’t hit my head as I suspect I don’t have enough control of my trunk otherwise.

Dad moved my manual out of the way and I started moving towards my powerchair. If my last proper fall is anything to go on I am getting a visit from the paramedics but my fixing this myself needs one proper attempt first.

I can’t crawl but I can move myself by doing a sort of rocking from side to side slither on my tummy (it’s not commando crawling)

I’m moving. This is good.

I get myself up on my knees on my first attempt leaning on the powerchair. This is even better.

Then I have a few moments knelt there trying to figure out what’s the best way of doing this. Pressing down on my cushion was my first thought but didn’t feel right.

I’m levering myself up. I’m getting more and more up and convinced that I’m going to get so far and lose it and crash down. So far I’m not really injured and I know when I do crash down it’s going to hurt. But I need to attempt this.

Only it ended with me up and twisting round and into the powerchair.

Neither Dad or I are quite sure how that happened (my last fall I was on the floor for over two hours and it took 2 people to get me up. I was covered in bruises for days after from both the fall and my failed attempts to get up).  Mum told me this morning that Dad went home and told her “she just got herself up.” She was also shocked.

I’m sat there and I’m shaky and full of adrenaline and tears and panic because that moment when you go from fine and moving to stranded and about to fall is scary as shit.  This is something that actually I need to write more about at another time.  And I feel bad because I woke my Dad.

But at the same time there’s another part of me that’s sitting there thinking “holy shit I just did a floor transfer.” and kinda wanting to grin and shout from the rooftops that I did it.  (I suspect adrenaline had a role in that and I may not be as able if it wasn’t an emergency)

*It turned out to be really bent rather than snapped. This was taken after Dad straightened it a little. the very badly bent out of shape castor on my manual wheelchair

>Reaching Crisis Point #disability

> NOTE: I’m ok but I wanted to write about this because I thought it was important. I kept talking myself out of doing so which is why its taken me two weeks to get round to it. I found it pretty hard to write and it’s quite long and I think raw.

Two weeks ago (give or take) I stuck some jacket potatoes on to cook. I went off and did a few bits including putting some washing in the dryer. I’d been in my powerchair for most of the day and after doing that (my powerchair lives in front of the dryer) I went to transfer back into my manual.

As I parked the Quickie I idly noticed that my potatoes had just under an hour left to cook. I wasn’t bothered and was planning to finish reading my book whilst waiting. I stood up and took the few steps I needed to turn and sit in my manual. Whilst standing facing my manual I put my arms on the seat for support.

It was at that point that I realised that having moved it since getting out of it that morning I’d not put the brakes on properly. The chair went flying back. I scrabbled a bit but unsurprisingly hit the floor. Hard. And I scrapped my right arm pretty badly as I did so. Caught it on the chair, I think on a footplate.

I lay there face down on the floor and considered the fact that I was bloody stupid. And then I noticed where something I’d misplaced was. I’d been meaning to ask someone to look and see if it had gone under a unit but now I wouldn’t need to because I could see for myself that’s where it was. I could reach it too. and did so. I decided that I’d be able to get a pretty decent “you know you’ve got CP when…” entry for my blog out of this.

All the while I was staying on the floor because I was having clonus and also I needed a minute to regroup. eventually I knew I’d regrouped as far as I could whilst on the floor and my clonus had stopped. So I started manoeuvring myself into a position where I could try and get on my knees and up into my chair. I can almost always eventually get myself up after a fall.

I lost track of the number of attempts I made. I just couldn’t do it.

If I got myself onto my knees I couldn’t lift my chest off the ground. And if I got myself sat up I then couldn’t get onto my knees. I think twice I got myself into exactly the right position to get up but still couldn’t. My legs felt incredibly tight. A touch of extension I think.

I got myself sat in the doorway leaning against the doorframe with my legs flat out in front of me. That felt like a really good stretch and I made the decision to stay there for five minutes or so and rest. Five minutes up I tried and failed again. Noticing that there were now less than 20 minutes until my potatoes would be done I realised it was time to admit defeat.

Ever since my old phone went missing in January I’ve had the new one on a lanyard around my neck. Only the lanyard was broken. And I had no pockets in my clothes. Luckily I knew where it was and was able to pull myself on my tummy (by rocking from side to side) to grab it from my bag. I called my mum and said those words I so hate

“I’ve fallen and I can’t get up”

She replied

“I’ll send your father.”. Her stock reply for situations such as these. Falls, vomit, changing my bed and cutting my toe nails all fall in that situation.

I propped myself up in the door frame until what felt like ages later I heard my dads key in the lock. It can’t have taken more than five minutes or so but it felt longer and I will admit just before he arrived I was beginning to be a bit “where the hell is he.”

Then he arrived and I apologised profusely and repeatedly for the problem. I also requested he do something with my dinner before trying to help me up as I didn’t want it to burn. I’ve got my priorities you see and at that point being on the floor wasn’t a big deal. He said they weren’t quite done and turned the oven down, amused at my concern.

Always, unless I’ve fallen somewhere unsafe (like when I got tipped out of my chair on the pontoon at sailing and there wasn’t safe space for me to try) if I can’t get myself up I just need help of one person. Always.

I lost track of the number times he tried to help me up. We tried a few different ways, using a pillow to stop it being so high, taking the cushion out of my wheelchair for the same reason (the front of my Jay 2 has a pommel which makes it higher than the rest and being that it’s a deep contour cushion it’s pretty deep already.). He also insisted on trying to swing me from sitting to standing which I didn’t want him too as I was worried about his back. My feet were slipping all over as well, compounding the problem. I got very tired and ridiculously breathless with the exertion. I’ve since been told by my mum that Dad thought I was going to have a heart attack. I find that incredibly upsetting and I cried when she told me.

Eventually he said he’d call my brother for help. Grabbing my cordless phone he wandered into my bedroom and called him. And then called my mum explaining what was Happening.

Returning to me he got me some water and then he said

“mum asked if you were ok. I said you were. Are you?”

I had to smile at that because that’s my family through and through.

It took my brother at least ten minutes to get to me. He brought his fiancé with him. I once again apologised repeatedly to all and them the two of the tried to help me in my chair I think twice. Neither worked.

Geri was feeling bad that she didn’t know what to do to help and I asked her to do something with my dinner (those priorities again…). After a brief regroup moment Ben suggested that trying to get me on my bed might be better. It would give us a bigger area to aim for.

He grabbed my arms and dragged me lying on my tummy through the hall and to my bed. From that point of view it was lucky I wasn’t in the lounge when I fell. They managed to get me on my knees propped on the bed and it felt much more secure than when they did it with my chair. There was a brief right let’s try and get you standing comment but I suggested if they could they just manhandle me onto the bed like that.

And finally nearly two hours after I fell I was lying face down on my bed. Safe.

Although squawking for someone to please move my foot quickly from where it had ended up as it was on top of one of the decorative bits at the end of the bed. ouch.
Geri brought me a drink and I rested there for several minutes. Then Dad brought my manual over and helped me into it.

We chatted for a few minutes and I sat my brother in the powerchair and used to riser to lift him up. They were very impressed and he was a little freaked our I think! Dad chucked my potatoes on a plate and with yet more apologies I sent them off with thanks leaving me to finally eat my tea and call my mum.

My arm was covered in really bad bruises for over a week. many people asked about them in a “oh my god” type way. I ached a lot for a day or two and my knees hurt for longer. Emotionally I was a bit of a mess because I knew that I had done this to myself and it was my weight that had caused it.

Things weren’t helped by a ridiculous access fail the next day and by something very valuable going missing from my house a couple of days later. Ive definitely been struggling hard lately.

Mum said that in all weight loss stories you read there’s a crisis point that the person reaches that made them realise they have to lose weight. This was mine.

Someday I’ll fall again, it’s a fact of CP life. I don’t ever want to feel that helpless like that again. And I definitely don’t want to scare my family that badly again.

I made a phone appointment with my GP. I told her what had happened and requested an OT assessment. As we were saying goodbye she said “are you ok other than your bruises?”

And I said “Yes I am…well, you know…”

She replies “yeah I know.”

Because she knows me and knows if it has to do with CP I’d swear blind I was ok even if I was dying. Because I don’t let CP stop me.

This is a hard entry for me to write. I almost didn’t amt to in case people felt sorry for me. And because I thought it was sound absolutely fucking terrible and it wasn’t.

Except… The truth it hurts me to admit is… it was probably the worst fall I’ve ever had. It scared me so much. And I’ve gone from “falls happen” to really worried I’ll fall again.

That’s not a way I want to live.


>My mood is somewhat better today; I actually feel like I’ve achieved some stuff which helps.

I have a positive looking outcome to an access issue I flagged on the horizon and as that was one of the things that made things tough the other week it’s a help to move things forward. My bruises from my fall are completely gone and a plan is in place to hopefully lessen the impact of future falls (so long as I can avoid falling in the next month or so) I REALLY must blog about that. The third crap thing I think will never be resolved but I’ve almost finished doing everything that needs doing to take it as far as I can. So I’m getting there and moving forward.

All of that crap and I haven’t shed a single tear over any of it. Amazing. Take a bow, sertraline.

This is my attempt at a funny poem. I like it but I think it isn’t good at the funny part.

This is a declaration
A declaration
Or perhaps
A proclamation
I’m not sure

But it is my intention
To provide
This information
In a decisive way

Shared across
The nation
With the intention
Of it being
A declaration
Or perhaps
A proclamation

Should be taken seriously
But now
it’s time to mention
That I’ve lost my train
Of thought
It’s gone
Never to be

This is my declaration
My proclamation
(the difference was
lacking from
my education)
To be shared across
The nation

Stop listening
To me
And go on
Or just have
Your tea.

♥ Emma