A Little Bit of Life

(I am surprised that with nearly 2000 entries on this site I’ve never used the title A Little Bit of Life before)

Two bits of not so brilliant but they could be much worse news are in my life at the moment.  I don’t think dominating my life is the right term but they are definitely big factors in everything right now.  And not easy. Life is never easy.

I will start with the slightly easier one first – my powerchair is broken.

The easiest way to explain it is to say it has a broken castor.  It’s more complicated than that because of the spider-trac but basically it’s not right and it’s manifesting in one of the castors (I’m not sure but I think they won’t need to replace the wheel to fix it).

It’s been niggling at me for at least a few weeks that it wasn’t right but when Mum looked she couldn’t see anything wrong with it and I wasn’t sure so I left it. But eventually I figured, it’s under warranty, get them out. And unfortunately it is broken. (the scary thing here is that I probably wouldn’t have called them out if I’d have had to pay a call out fee). I’ve been waiting 10 or so days for the part to come in which will hopefully be at some point next week. I’m told it’s fixable and it’s covered by the warranty. I’m also told the wheel is definitely not going to fall off and I can keep using it in the meantime (although I’ve chosen not to go to Reading today like I wanted to just in case). So it’s positive bad news. It does need to go into the workshop when they have the part though.

The second part of the news is that I went to the Drs last week to discuss my mental health and am now on Citalopram for depression and anxiety.  I was last on antidepressants very briefly two years ago at which point I came off of them much sooner than I should have. I’ve decided to commit to at least a year of meds this time.

I said to her that a lot of the time previously it’s felt like depression was the bigger issue but as much as I am depressed now my anxiety feels much more prevalent. That’s why she gave me Citalopram as opposed to the Sertraline I’ve had most recently.

Citalopram was actually the first ever antidepressant I took in 2003 when I was diagnosed originally but I had to come off of it after a couple of weeks due to nausea. It had been getting better but my then GP said to try a new drug (I went onto Lofepramine for 18 months and then had several years on and off of Fluoxetine before trying Sertraline). My current GP has put me on a 50% dose for a few weeks and I’m only just a week in but I’ve had one terrible day for nausea and a day or two of feeling off. So it’s more positive than I hoped.

I won’t go into the ins and outs of how everything has been and all that.  What I will say is that it suddenly feels so much harder to talk about mental health than it has done in previous years.  A huge part of that is that a couple of people I’ve talked to about it have been really negative about it and my choosing to go on meds.  And in one case gave me some unasked for advice that was potentially very dangerous (thankfully as this is not my first go with this I knew they were full of shit).  I might blog more about that at some point soon ish as I’m hoping to get back to writing regularly but I think that’s all I’ve got to say for today.

Milo

I used to be scared of dogs.  Full blown petrified.  I couldn’t even be in the same park as one without being frightened.  And a lot of people who had dogs would say their dog was harmless and wouldn’t scare me but it would. Or they’d tell me parents to give me a day with them and their dog and I’d come back cured. I think the problem is that there was never any thing that my parents or I could put our fingers on as the reason why I was scared (I later developed something of a fear of/hatred for cats and I can tell you exactly why that happened).  There are a lot of memories and stories of things that relate to my phobia of dogs – it was a big thing.

And then I went to uni. On the way home that first Christmas my Dad mentioned they were getting a dog. I freaked out. I didn’t believe him at first. When I realised he was serious I panicked and cried.

I went back to uni before they got the dog and when they did I didn’t want to hear about it.  My family came to visit a few weeks after they got him and brought photos. I was not going to look at those photos. My friend I lived with and my carer were really keen to see the pics but not me.  I did eventually be convinced to look at them but I didn’t want to – I was scared of dogs and I didn’t see the need or the attraction of a dog.

Then we got to Easter and time to go home again. I was so panicked in halls as my Dad packed the car with my stuff that I was basically hysterical and I physically threw up.  They struggled to get me in the house when we arrived but eventually I went in and I met Milo.

I was uncomfortable and a bit scared after that but I was coping. I remember the next day we went to visit my Nanny for lunch and I was really relieved because we’d be gone for a few hours and he wouldn’t come. I could have a break from dealing with him. But then I remembered that she’d moved since I was last home from uni and instead of being about a 25 minute drive away she was now a 5 minute drive away so we wouldn’t be gone as long. And it turned out he came too.

Within a few days I was comfortable with him and happy to stroke him, throw his ball etc. I remember my Mum commenting how quickly that happened, more so than she’d expected I think.  And that grew to being comfortable to be around other dogs too.

It grew to many years of fun and laughter and even frustration and annoyance when he was being a pain.

I remember being out walking him one uni holiday. I was in my manual being pushed by my Dad and holding Milo’s lead. And the manual broke. I’m not really sure how he got us all home.

I remember just how much fun he thought an empty plastic bottle was. And how scary a sneeze was.

When I stopped wearing socks at all I used all of the ones I had to make sock toys for him. He absolutely loved them. The last couple of years I would go to the pound shop at Christmas and buy socks especially to be able to make him one.

I cried the day I heard my family were getting Milo. Because I was scared. I cried harder the day I met him. Because I was more scared.

And on Monday night I cried when my Mum rang to tell me that at the ripe old age of 16 Milo had been put to sleep.

(I’m trying not to cry writing this)

I’m still a bit wary around dogs I don’t know if they’re running loose and I think I always will be (although admittedly I had a negative experience with someone at sailing’s dog earlier this year which was actually made more negative by the way the owner handled it so that may be influencing that).

I would have sworn blind, had you asked me, that I didn’t need to do anything about my dog phobia. It wasn’t having that much of an impact on my life (I thought) and was much more of a problem for others than me (because they thought it was a big deal). But then circumstance meant I had to.  And I’m really glad that I did.

Milo

A photo posted by Emma (@funkyfairy22) on

So Take Me As I Am

(title is a lyric from the Meredith Brooks song Bitch)

A couple of weeks ago I was asked how I’d enjoyed a show I went to by a member of staff there who I know. I had enjoyed it but there had been one thing that had happened – which was tangentally access related – that had really irritated me.  It was totally inconsequential and unlikely to be repeated but it had had an impact on my enjoyment and they asked so… I said “If I could just make one slightly bitchy point….”

More recently than that I discovered that the actions of someone else have left me with a huge mess to sort out. I feel more than a little screwed over and beyond frustrated as I did everything I was supposed to do but the person who was supposed to do the next part didn’t and because they didn’t do it at the correct time they now can’t.  And I’m the one who will lose out if it’s not done so I need to do it.  Their failure makes me look bad.

I was ranting to a good friend about that and I said “I know that this is really bitchy but I hope X happens because of this”

She stopped me and said “that’s not bitchy at all.” and made some other comments about thinking I’m acting like a bitch when I’m not.

I say stuff like that all the time when I complain or raise issues.  Phrases like “I don’t mean to be a bitch but…” cross my lips all too frequently.  And really they shouldn’t.

Complaining or raising issues in a constructive or fair way is nothing to be ashamed of. It’s only right and I’m sure that if able-bodied people had to deal with half the crap I have to they wouldn’t be half as calm and dismissive of it as I can be.  Recently a few things have happened which have made me realise just how abnormal my version or normal really is.

A third issue – one of disabled toilet accessibility – reared it’s ugly head. I really thought all the able-bodied people around me were blowing it out of proportion.  It was just one of those things. It happens and it’s irritating as hell and it really shouldn’t but what can you do?!  There were a couple of ways I could work around it and I’d almost never go there again anyway as I was unlikely to have a reason to.  I knew I should complain about the issue and have something done but it happens a lot of places and I was in the middle of dealing with the second incident I mentioned above and just didn’t have it in me to do anything about it.

When one of the people running the event (not the venue) asked me about it I did tell her about it. I told her it both was and wasn’t an issue and had to stop myself talking it down. I don’t think I did a good job of that. And one of the things I told her about was how I worry that people will think I’m alway moaning or never happy.  That I’ve heard those phrases along with “ungrateful” and “argumentative” many times and “you have to understand we’re doing our best” and “we don’t really get many wheelchair users” are among the stock excuses.  It grinds you down.  I wonder, sometimes, if part of the way I so often almost apologise for my complaints or put myself down by phrase it as “being a bitch but” is because subconsciously I think that’s the only way I’ll be taken seriously.  I think the person I was talking to go it and she reassured me they don’t think that about me.

Only.

Later in the session another member of staff wanted to ask me about it. Fine. They wanted to know – was there actually a problem or was the problem that I have a new wheelchair and I’m not used to it yet?  I took her and showed her how it wasn’t big enough for my chair and she got it. But talk about proving my point!

I wish that was my only example of that sort of thing from recently.

It’s not – last Sunday a well known pizza chain refused to serve me because they had a booking for a short time later that they’d chosen to book all of their (small) downstairs for and they had no lift. They had no desire to come up with a solution (I could see from how they had it laid out that a small rejig could have fitted a table for me and my friend in too) and didn’t even apologise. It was clear that they considered I had the problem not them.  And a request I made early this week to another organisation for an explanation why something had happened resulted in my receiving an email Friday that didn’t explain it and basically suggested I should put up and shut up. Again, I was the one with the problem not them.

My friend above who made the comments about thinking I’m being a bitch when I’m not is right, I should stop doing that.  But it’s a bloody hard habit to break when society is desperate not to take me as I am but to blame me for it instead.

Surrounded by Sadness

After I wrote the things that make me happy post on Saturday I’d planned to write some more on the subject. I will write more on the subject I’m sure but tonight sees me writing about the opposite of happiness.

Because there is a hell of a lot of sadness around me lately.

I heard of the death of a friend of mine and my parents yesterday.

It was I think the sixth death I’ve heard of in the past seven weeks. Plus my Dad was saying he and my mum know of two others who have died recently.

Two distant family members. For one she was in her nineties and I think it wasn’t unexpected. The second was unexpected and frankly in shocking circumstances.
A very vague acquaintance I’d not seen in years and who probably didn’t remember me
Two people within the wider challenger sailing community, one of whom I’d met briefly once or maybe twice but mostly exchanged a few emails with. The second I don’t think I’d met or at least his name didn’t ring a bell. But he was sailing when he died and I do know the person who was on the boat with him at the time which got me a bit…
And now our family friend.

Funnily enough mum and I used to quite often see him and his wife at the arts centre. We were there three times last week and I’d commented to mum that we’d not seen them for ages and I was surprised they weren’t at the talk on the power station. Then we went to Gyles Brandreth on Saturday and we saw his wife (we know them because she was my carer when I was tiny before I went to school and they used to visit us at least every Christmas until I was well into my teens) with who I assume to be one of her granddaughters. She was telling us about her husband. How he was poorly and in hospital but it sounded like he was in good spirits. We said “send him our love” or words to that extent. And then we went into the show.

And afterwards I was by the merchandise table waiting to get my book signed. She came by and looked at the books. Picked one up saying she’d get it signed for her husband because he’d been meant to come to the show with her. Joined the queue behind me.

Then mid morning yesterday my phone rang.

When my mum rings in the middle of the day in the week it’s usually something wrong or some sort of specific question that needs an immediate answer, often tech support for her computer. And I could tell it wasn’t going to be one of those situations where I’m on the end of the phone trying to tell her how to find something on her laptop and getting annoyed because it’s so obvious if she’d just look properly and she’s at the other end getting even more annoyed and declaring “stupid computer!” In the tone of voice she gets when she’s about ready to chuck it out the window.

And it wasn’t.

She was ringing to tell me of a trip to Tesco, of hearing that our friend had died and a long hug in the middle of the supermarket.

Yet more sadness. Like a bolt from the blue.

I’ve been dealing with a lot of problems lately. Wheelchair issues with both my manual and powerchairs, anaemia, the hospital transport disaster last week. I’ve been feeling crap. I’m run down I think and pretty stressed.

But at the same time all I keep hearing lately is about sad things. People struggling and so many deaths. I don’t remember ever hearing of so many deaths in such a short period before. And in a way that scares me.

It’s like I’m surrounded in the periphery at least by sadness and people struggling.

Am I sad? Yes and no. I’m sad about our friend who just died. I had a drink at the arts centre at lunch with some other friends. It was weird to think he’ll never make me jump again by appearing behind me in there to say hello. I was sad to hear of the other deaths too. But most of all I’m sad for all the people around me who are struggling because of that.

So as much as I planned to sit down tonight and write my follow post about things that make me happy, I can’t. Because happiness and sadness go hand in hand. And I needed to write about that sadness first.

Recognition

Not long after I wrote yesterday’s post it occurred to me that I’ve actually been doing a brilliant task lately of taking better care of myself. And that not only is the guilt I felt yesterday unnecessary, it’s also unwarranted.

I’ve always struggled with recognising the good things I’m doing. For some reason it’s much easier for me to remember and focus on the negative than the positive. I suspect that’s true for most people but it feels like something I need to work on going forward. Make it a goal for the rest of the year perhaps?

At CAB I often point out to clients things that from my perspective as an adviser they’re doing well. Usually little things they’ve probably dismissed as nothing but which I frequently see clients who’ve not managed that. The usual example used in training advisers is the person who comes in with letters they’ve ignored because opening them is too much. Sometimes they’ll sit in reception and open it while they wait. But at other times the adviser does it for them, Or the person who needs to do something on a deadline and doesn’t seek help until the day before.

When I was going through the IB to ESA transfer I got the first letter and basically lost it. Totally freaked out. I was in the bureau that afternoon, still struggling. They did the same thing with me “Emma, you opened the letter and dealt with it. Think about some of our regulars in a similar position. Several of them wouldn’t have even opened it”

That recognition of the little things I’m doing right is something I need to start applying to myself. Along with looking at the bigger picture of how it all fits together to form a greater whole. I’m not sure how but I’m thinking about it.

Because the fact of the matter is: I’ve been working on three taking care of myself goals for the past week or so and achieving them.

It’s easy to forget about because they seem so small but it’s actually pretty huge

In which I ramble and am grouchy when it comes to “awareness”

(I was going to title this “why I’m not blogging about CP awareness day” and then I realised that by writing this I pretty much was blogging about CP awareness day just not in the way most people are and that would be a pointless title)

So. Word on the street the internet is that 25th March is CP awareness day. i.e. that tomorrow is CP awareness day.

Except,  to me, it’s not, really.  It’s national CP awareness day in the US.  I’m not in the US and I sometimes feel like the entirety of the fucking internet resolves around people from the US  and that those of us not in it get forgotten about (do you know how many book competitions etc I can’t enter because they’re US only?! Too many).

I just deleted everything I’d written after this point.  I’d somehow managed to hit 443 words without even beginning to cover the point i wanted to make with this entry. Clearly I suck as a concise writer. Particularly when I can actually sum my point up in one TL;DR sentence. Which is:

I don’t really see that there is any need or point in awareness days in general and particularly for CP.

I don’t know what they do.  I find that a lot of people assume I have MS but when I tell them it’s CP pretty much everyone has heard of it. (I did have one rather amusing conversation last year with someone who had CP and CF (cystic fibrosis) confused but…).  I’m not sure why I might need more people to know about CP.

It’s not like there’s some Sheldon style mad scientist in a lab somewhere who has never heard of CP and is sitting there going “hmm I’ve found a cure to some random neurological disorder affecting people from birth and mostly causing mobility difficulties and spasticity but I just don’t know what disorder it is. If only someone could make me aware of it’s existence I could change the world for the 1 in 200 babies born every day with it. What a dilemma.  If only… if only…”

I don’t need a cure.  I’m pretty much perfect just the way I am.  I’m the person I’m meant to be right now.  Plus, given that I’ve spent 31 years using my body in a way it wasn’t designed to be used I’ve got some unusual wear and tear going on (hip issues for one) that curing my CP could halt or possibly improve but wouldn’t get rid of. Also? CP is brain damage. Ain’t no one touching my brain.

And most importantly I can’t help the part of me that reads or hears things about the desperate need for a cure for CP and thinks “there are plenty of other conditions out there that need curing more.  Ones that kill people.” Focus on those.

I class disability awareness and CP awareness as different things.  I believe disability awareness is important.  It’s through the disability rights movement that the community as a whole can improve access and achieve things.  Focusing on little things for one condition or another can’t do as much much as focusing on the majority.  Which is why days like the International Day of Disabled People are much more relevant and important to me (the fact that the entry I wrote for it last year remains one of my most powerful in my opinion is nothing to do with that, honest)

I truly believe that the best way I can help myself and others with disabilities – be it those with CP in specific or disability in general – is just to live my life and get on with things. If people see me doing and being I think I achieve more than if I do some specific stunt to raise awareness of CP.  Because to me CP isn’t just one day – it’s everyday.  And I’m much too busy to do anything more than live my life.

For the love of a book

I love to read. This comes as no surprise to anyone who knows me or who reads this blog regularly I’m sure.

There’s just something about picking up a book and losing yourself in it. It makes me think, I learn stuff, it’s enjoyable. They make me laugh, cry and just feel. Sometimes I reach for a book as pure escapism and it also means as long as I’ve got a book or my kindle in my bag I can fill a few minutes waiting at the hairdressers or the doctors really easily and it makes the wait less annoying.

According to statistics 1 in 6 adults of working age in the UK find reading difficult or impossible. Quick Reads is a charity dedicated to improving literacy. They aim to show that books and reading can be for everyone. Each year they commission big name authors to write short books that are specifically designed to be easy to read. They are the same as mainstream books in every respect but are simply shorter and easier to tackle for adults who are less confident in their reading skills. The books are then sold through major retailers, online booksellers and are loaned from libraries. They are also very low priced – usually £1 – which makes them even more accessible.

I can’t imagine not being able to read. I just can’t.

Books are such a huge part of my life and so is writing. I don’t know what it would be without it. But the thing is the ability to read is about so much more that books. It’s about being able to read directions to places you need to go. How much and how often to take the paracetamol you just picked up. instructions for your new oven or even how long to cook that pizza.

If you can’t read and you get an official letter what do you do about it? At CAB often I see clients that need to check what a letter means or what to do with a form they’ve been sent. Some of the time it’s because it wasn’t written in plain English and they need jargon translating. We’ve all had letters like that where we think “I know what it says but I don’t know what it means”. Letters from the DWP are a frequent example. But often people who come in with a letter only have a vague idea what it’s about because of their literacy level or haven’t been able to read it at all.

Letters about benefits are very distinctive. They come in a brown envelope and the typeface peeking through the window of it is this one particular one that to me and I’m sure many others screams DWP. And “Doom!” to some. I know a letter is about benefits before I open it and as I’m currently awaiting an ESA decision I appropriate all brown envelopes with some apprehension and ones obviously from the DWP with more.

But I can read. I can open that letter and know what it says with as little or as much delay as I choose. Many people can’t. I can’t imagine what the fear of that letter would be like it if was multiplied by the time it took to find a friend or relative who could read it or to get to a CAB or similar that was able to help. I know an inability to read fluently has meant deadlines and appointments missed to some people – and potentially worse.

So when Quick Reads told me about their six new books for 2013 and asked if I’d like copies and to help promote their literacy work I of course said yes! I’d read a few before and knew they were very enjoyable and was intrigued to see what they had this year.

The six books are:
A Dreadful Murder by Minette Walters
A Sea Change by Veronica Henry
Doctor Who – The Silurian Gift by Mike Tucker
Love is Blind by Kathy Lette
Today Everything Changes by Andy McNab
Wrong Time, Wrong Place by Simon Kernick

I’ve been reading some of the books over the last few days and I’ll be posted a review or two later today.

Talking, Ten Years Later

It’s that time of the month again when I mosey on over to Bea Magazine and share what I’m thinking, feeling, doing, whatever with them.

I don’t like February. There have been a lot of tough times in previous ones and there are several anniversaries now in a short time. It’s been long enough now that most of their sting has gone but still it lurks. This year I remembered the dates but it wasn’t until several days into the month when I wondered why I felt down and put it together that its often a time I struggle.

Yesterday marked 10 years since I was first diagnosed with depression. It is what it is. I can’t change it and I’m not sure I would if I could.

I’ve written a bit about that over on Bea in Talking, Ten Years Later.

Inspiration Porn

Tonight is the yearly Children in Need appeal here in the UK. BBC One is taken over by a telethon for about seven hours. The idea is to raise money to help disadvantaged children. So you see video clips of children from other countries walking miles for water, young carers helping their mum or dad and disabled children doing things too. And it’s a given that those children will either look sad or have their story told using emotive language such as “suffers from…” Or “whilst other children are playing little Johnny must…”

Interspersed with those clips are famous people doing silly stuff, frequent updates on how much has been raised and brief mentions of members of the public doing sponsored silences. Locally a lot of schools have had PJ days to raise money. Those can sometimes be funny and a child I was a big fan of Children in Need.

Now? I hate it.

This is what’s known in disability circles as “inspiration porn”

Inspiration porn is something which is designed to highlight the differences disability brings and invoke pity. In some cases this pity is to raise money for charity, in others it’s to encourage people and sometimes it’s designed to make them think. It’s a bit like the ultimate embodiment of the phrase “there’s always someone worse off than you”. I am disabled and therefore, automatically, my life is terrible, I am an object of pity and you have it much better than I do.

The phrase that will be heard a lot on telethons is “can you donate to make a difference to a child like little Johnny” invariably after they’ve just told you how terrible his life is. The inference being that if you can’t you obviously don’t care about him.

It’s the picture doing the rounds on Facebook with the “the only disability in life is a bad attitude.” Attitude is huge. But I can’t put on my Bolshie face, wheel up to the local shop that doesn’t have wheelchair access and stare the step down until it magically turns into a ramp and lets me in. And as much as I do my damnedest not to let my CP stop me that doesn’t make me amazing and I’m sure as hell not inspirational. The idea behind that I believe is that it makes nondisabled people think “if she can do that with all she goes through why am I moaning?” And such like.

Or it’s the advert at the train station which shows a little boy in a wheelchair with the phrase “he wishes he could leave this behind too.” And the details of how to donate to one of the disability charities. Because clearly he’s trapped by his chair. The idea as with all of these is to make you pity him. Only when I saw that poster I was sat in my wheelchair. On the train as it pulled out of the station. Fail.

Disability does make me different to other people. Wearing glasses makes to me different to other disabled people. The fact I like to dye my hair, live alone and am a big NCIS fan makes me different again from other glasses wearing disabled people. It’s a fact of life and a characteristic of me as any other for anyone else in the world.

I knew, growing up, that at least one of the organisations I was involved with had received money from Children in Need (although I don’t think it was ever featured). But I never realised that I was one of those kids. One of the ones who were shown “leaving the confines of their wheelchair behind for an hour once a week whilst they ride a horse.”

I’m glad I didn’t realise. It took me a long time to become the vaguely confident outgoing person I am now. It would have taken longer if I’d grown up with the knowledge that my life meant I was an object of pity who needed charity lives a terrible life and who is held up to others as a reason why they’re lucky. Because obviously the fact I survived being deprived of oxygen at birth at a time when the medical world wasn’t as developed as it is now means I’m terribly unlucky.

More than your charity I want your support. And for me that comes from being treated with respect. From people recognising who I am and my individuality, not making assumptions and letting me be me. That’s going to make more of a difference to more of those “children in need” then all the money donated in it’s entire 30+ year history.

If you want to help people donate direct to organisations and bypass those events that thrive on making people feel bad.

See the girl, see the truth, see the life. Accept me and those like me. I’m here living me life. Like you I’ve only got one shot at it and I don’t have a choice but to do what I do. I’m here to enjoy myself, not to inspire you or be pitied. Open your eyes and say no to inspiration porn.

Time and Change

“Time, which changes people, does not alter the image we have retained of them.” ~ Marcel Proust.

I was looking for quotes and I came across this.  It’s very apt particularly as I seem in be in a period of ongoing change in my life at the moment.

I think some of the changes may have the potential to be very good for me once they’re finished with.  But not all of them were my choice or are under my control.  And a couple of them are pretty scary.  I had a pretty big panicked cry over one the other day. Not fun.

I know that once this is sorted out I’ll be OK.  In some shape or form.  But that might not be one I’d like or have chosen.  And that’s pretty huge.  I’ll be OK.  That’s what matters.  I’ll be fine.

The journey will probably suck but in the end all will be well.

I was thinking though that sometimes I can’t understand who I am any more.  I don’t see the girl I used to be under who I seem to be right now.  I don’t see me.  Emma is lost, perhaps.

Then I read this quote and I realised that I know who I am right now, what I’ve done, where I’ve been, what I want from life etc.  But my mental view of who I am, the girl I picture when I think of myself and how things used to be?  That needs to catch up a little after all the changes I’ve had.

I’ll be playing catch up for a long time perhaps.  And maybe I never will see where I am in the moment when I picture who I am and set expectations for myself.  But I suspect that’s normal and the same for everyone else CP or no.   Life isn’t static, after all.

But CP sure as hell complicates things.