green grass, boats in the boat park, dark blue stormy sky and the shadows of me and the friends I was standing with when I took this.
Setting sun over the water with boats in silhouette
I’m reading a good book at the moment. I hope to finish it tonight and I’ll review it for my blog in the next few days most likely. When I flicked to the back to see how many pages it has I noticed that on the page after the end of the story there is the following quote.
“Sometimes our light goes out but is blown into flame by another human being. Each of us owes deepest thanks to those who have rekindled this light.”
I’ve had a tough year I think it’s fair to say. And things are greatly improving and I feel like I’m not in the best place I’ve ever been in but I’m certainly in a much better place, possibly even a good place.
I love quotes as anyone who has read my blog for a while will probably realise. This resonnated with me a lot.
I’ve spent time this year feeling as though I was worthless. As though the ridiculous disablism I experienced at the hands of the NHS (something I don’t think I ever shared fully on my blog and I doubt I ever will) destroyed my self esteem and confidence. It’s coming back but I still feel more fragile and a lot less confident than I used it in some ways.
Putting myself back together isn’t something I can do alone though – I’m only where I am now because of the people who “blew my light into flame” if you will.
My family. My friends. The ones who get the problem when I explain it and the others who get my text and immediately text back “oh fuck.” because that’s all there is to say and they know I can’t handle being told not to worry. The ones who point out the bigger picture.
The people from the You Know You Have CP When… group for providing me with a sense of solidarity and understanding I’ve not felt in a long time (seriously, 300+ CPers – you know you can post and at least one other is there to say “yup, been there.” HUGE.).
The people who had nothing to do with what happened but tell me the way I was treated was unacceptable and they’re sorry and will see what they can do. The guys at one of my favourite Oxford venues who at a point on Sunday when I was about to lose it inadvertantly made me laugh. Those who lurk in the background. The ones who deny they’re doing anything special. And, sadly, the ones who show their true colours making me realise I can’t trust them as much as I thought I could.
Those who do things I would never expect. On Sunday the Oxfordshire NaNoWriMo kick off meeting was at a venue I’ve been to once before but not since I’ve had this chair. I’d forgotten that the entrance wasn’t properly ramped which meant I couldn’t get in as trying to go up it triggered the safety cut off thing.
My friend is one of the organisers this year and came over to see what was up. She said she was really sorry (to which I said it wasn’t her fault) and that next week we’ll go to another venue which has great access plus totally rocks. By this time I’ve got the cafe owner trying to make stupid suggestions of what I can do to get over it (it’s a mechanism which kills all my momentum if I try and go up something particularly steep to prevent the chair tipping and it can’t be overridden or pushed past “Go as far as you can then stop and try again and “go backwards” won’t work). When my mate then asked what about now I said I was leaving because I couldn’t handle any more faffing and knew I’d cry if I had to.
10 mins later I was almost to the station when I had a call saying was I on the train yet because all 14 of them were leaving the cafe for the accessible venue. I went back to meet them and got there before them. Two of that 14 are my friends and three others I’d met briefly before. I was blown away that a group of mostly strangers would do that for me. Hell in the past I’ve had difficulty getting groups where practically everyone knows me to use venues I can access.
I try to always say thank you to those who prop me up and support me but I fear I’m not always clear or successful enough. My light wouldn’t have come back anywhere near as quickly if not for all the people who surround me.
>I’ve been saying for a while that I planned to write a “what’s life really like” type blog post. This isn’t intended to be a moan or a woe is me type post… it’s just intended to highlight that which I don’t often show and what saying “I’m fine” can really mean.
So far today I have
Spasmed and kicked the shower screen as a result knocking it open. But thankfully the shower was facing away from it and I caught it quickly so didn’t flood the bathroom. This happens most times I shower and the screens no longer fit together well.
Needed help to put my left shoe on as my spasticity just wouldn’t let me get that one on properly although it would let me get the right one on. Worryingly that’s getting to be a bit of a situation normal.
discovered that I can’t get into the back of my mum’s new car. So little leg room and so tight legs that I didn’t even try it.
And that my chair (which we had thought would fit easily) needs a wheel taking off and a lot of jiggling to get it in the boot and even then it’s a ridiculously tight fit meaning if there’s more than just me and mum in there it’s not practical.
Wheeled myself around Reading. This involves being dropped off and picked up right outside one of the shops and skipping some of the places I would usually go due to spoons/distance/extra time needed when in the manual. BUT I will say that I definitely think I’m getting a bit fitter.
Asked several complete strangers to open doors for me, fill up a cup with water from the machine, put rubbish in the bin for me etc
Had to get the shop assistants to put things in my rucksack each time I bought something.
Called my mum to ask her to meet me and help me sort out some tops to try on (knew she was in the same shop I was as we’d just been dropped right outside) due to reaching, not being able to see sizes (height again) and carrying them. She came in the changing room with me as she had a top to try on too and that was easier although I could have managed tops without help.
Been very impressed that I didn’t have to wait at all for things to be moved out of disabled changing rooms. And then thought about how wrong that is – most people aren’t impressed when they can try tops (1 shop) and bras (2 other shops) on with no fuss, it’s what they expect!
Queued in one shop to ask for someone to help me reach the bras and find my size. Which meant I had to tell her my size but thankfully I’m not modest about things like that.
Spasmed so hard that my footplate is knocked out of shape and needs adjusting yet again. This seems to happen every couple of weeks. But this is better than when I snapped a bit off in a spasm a couple of weeks ago (same leg, it’s always the same leg) and had to have a replacement part fitted. It’s no wonder the last time I called the repair guys I said “Hello, can I arrange for my chair to be fixed please?” and they went “is this Emma?” is it?!
Gotten home tired and achy from shopping and needed to rest to recover.
Resorted to painkillers for my sore hip (probably due to spasticity as it’s my “good” leg hurting and the theory is it takes more of the strain when I transfer etc) and achy elbow (likely due to the wheeling). They make me feel a little more tired and out of it but I’ve not taken everything I can so it’s better than it might be.
Drank more than I wanted to as I was worrying I’d not had enough today (a frequent occurrence since I had that UTI).
I’m now going to sit outside and read a book for a bit. I’ll transfer into my powerchair to do it because I can tilt it right back which is important as otherwise I’d have spent too much time in the one position which is not good considering I’m at risk of pressure sores.
Oh and when I make some dinner in a bit. I plan to make extra and freeze it for a day when I either don’t have the energy or the time to make a proper dinner.
>Annoyed me lately (a like incomplete list)
Burning my tongue on hot lasagne at the CAB social last night. Oww it’s still kinda sore now
Driving my powerchair into a lamppost earlier today. I’m fine. So is my chair. But seriously, WTF?! I never do that!
People who put a capital A in the words disabled, disability, disablism etc. So very annoying and patronising. I’m disabled, it is what is is and lets not pretend otherwise or try to put an unnecessary PC twist on it.
Likewise, those who use the terms, “different abled” or “less able” I’ve never heard anyone outside of Glee use the term “handi-capable” or otherwise that would be on there as well.
People telling me they feel for me.
Or calling me a “good girl”
Being asked why I’m in a wheelchair and the person not getting why I made a joke as opposed to answering (I said “because it’s fun.” They said “I’m sorry?” and I repeated it then they stared at me blankly before I said I have CP.)
The question/suggestion that exercise might help my disability.
Getting up in a panic because I slept in when I thought I’d need to sign for a parcel. Then having it arrive an hour later and just put through my door with no signature.
The fact that assisted travel are saying that yes my travel went wrong but wasn’t bad enough for me to be entitled to the automatic compensation.
And most especially the fact that they didn’t apologise either in the letter.
been enjoyable lately
The fact that the assisted travel major fuck up happened on a trip to meet a researcher to discuss what it’s like to be disabled and travel by train! The guys at my home station were killing themselves laughing when I got back and told them that.
A member of staff at Center Parcs pushing me up the most ridiculously hill whilst running(!) and us overtaking my friends whilst doing so. He then commented that he wasn’t very fit. If that wasn’t very fit I want to know what is!!
One of mine and Bendy Girl’s trademark very long chats this afternoon – our longest yet I think (this time on Skype)
The CAB social last night
Yummy chicken wings and lasagne at the social. I consider lasagne something I like but am not overly keen on and it was gorgeous – a nice surprise.
Losing 4 and a half pounds after one week without coke and chocolate
A new Star Trek book to read – especially as its a Next Generation one.
Cranberry and Raspberry squash. Although I might have been drinking a little bit too much of it over the weekend.
The Apprentice USA – for some reason it cracks me up.
>A few weeks ago I heard this song again and wanted to share it here. But I was sure I’d already done so a while back. I went hunting for the entry it was in and I can’t find it so either I was wrong about that or it is here but not filed under the obvious category.
It’s about the way in which we live – and good ways to do so. It does make reference to God at one point. I don’t particularly agree with that part of it but it’s still a good song. Overall I love the message it brings and it’s one I agree with.
Point of Grace – How You Live (Turn Up The Music)
Wake up to the sunlight
With your windows open
Don’t hold in your anger or leave things unspoken
Wear your red dress
Use your good dishes
Make a big mess and make lots of wishes
Have what you want
But want what you have
And don’t spend your life looking back
Turn up the music
Turn it up loud
Take a few chances
Let it all out
You won’t regret it
Looking back from where you have been
‘Cause it’s not who you knew
And it’s not what you did
It’s how you live
So go to the ballgames
And go to the ballet
And go see your folks more than just on the holidays
Kiss all your children
Dance with your wife
Tell your husband you love him every night
Don’t run from the truth
‘Cause you can’t get away
Just face it and you’ll be okay
Oh wherever you are and wherever you’ve been
Now is the time to begin
So give to the needy
And pray for the grieving
Even when you don’t think that you can
‘Cause all that you do is bound to come back to you
So think of your fellow men
Make peace with God and make peace with yourself
‘Cause in the end there’s nobody else