Leanne’s Story

Intro: Leanne is one of my friends I have known the longest. We used to go to summer school together where we’d spend hours playing Dominoes and obsessing over Darren Hayes.(He was in a band called Savage Garden. In my opinion they were one of the best things about the ’90s, but that’s not for this blog).

I’m so glad Miss busy-bee Leanne has finally found time to share her story with you, I’ve been bugging her to write a piece for ages! So thanks, Leanne 🙂 Here it is:

Hi there!

I have Cerebral Palsy, like Louise. In fact, we always used to be fairly evenly matched with regards to our physical ability. Growing up I had an almost idyllic childhood, my parents were, and still are, incredibly supportive and I rarely felt that I was missing out on anything as a result of my disability. Of course, if my friends were going ice-skating, or climbing trees, or going swimming I’d get a bit sad that I couldn’t join in but I never felt that I was having to sacrifice much. I had support workers from pretty early on in life and more often than not if I was invited anywhere, I would either have my parents with me, or someone who was there as one-on-one support for me. I used to get picked up by a school bus at my front door which would drop me outside the school gates, where my support would meet me and from that point, would be by my side until I got dropped home again.

I have always been shy and more than slightly awkward and having a support worker with me all day meant that I always had someone to talk to, it meant that I could avoid social situations in class because I would just sit with her and be perfectly happy. I would have a few friends that I would sit with too but it would mean that I would never be forced into awkward situations- that was how I wanted it- for the first time I learned how to use my disability. Along the same lines, I quickly learned that if I wanted to get out of going out anywhere, I had a very legitimate excuse not to go alone, or not to go at all. I got it into my head that I had no way of being spontaneous or breaking any rules because I was always with someone who was responsible for me and for my decisions and so skipping school was impossible, staying out late was impossible, getting drunk was impossible, meeting someone I wasn’t supposed to was impossible and I was secretly thrilled that I never had to push my own boundaries. This is all well and good until you get given freedom to start moving these boundaries.

When I moved away from home and support was on-site and I didn’t have the same time constraints with my care, I couldn’t hide behind anything anymore. All the things that were possible seemed terrifying and I felt like I was breaking the law. I was 18 before I got drunk for the first time and staying out past care curfew was the extent of my rebellion.

I’d never been on a date, because the only relationship I’d been in happened very organically and ended before anything really started and nobody would have thought it was anything more than a friendship. The thought of dating was really odd- I felt that I needed to confess to someone where I was going, who I was going with and what the plan was. I was never at ease with doing anything that would have previously been monitored by someone else. It took me the longest time to go out and meet someone and feel like it was okay that nobody necessarily knew everything. That it was okay, I could have secrets. I could kiss someone and nobody cared, it was my business and nobody else actually cared what I was doing. Even though I’ve broken through most of those barriers now, spontaneity is an ACTUAL issue, as in I can’t just go somewhere on a whim without someone there because I need hoisting onto the loo, I need a commode chair too- which is neither practical, nor sexy and the alternative is so far away from sexy that there wouldn’t be a date beyond that point. So, dating for me can’t be spontaneous and I really have to trust someone to let my guard down and explain all the different elements to my care… it’s a pretty big deal to help someone you’ve only met once to get onto the toilet and to help them do things that you probably wouldn’t even do for your family. Tinder hook-ups don’t really work too well. Is that legitimate? Or is it really just another way for me to avoid the awkwardness?

I’ve rambled on- but I’d like to end this by saying that I know plenty of people who have disabilities like mine who have had entirely different experiences, so I know that my awkwardness has so much more to do with any of the above rather than my physical ability. I learned how to mask a lot of stuff with my disability and I’m still learning that I need to take the mask off…

No Time for Spontaneity

Now we’re in April, this year really is flying by!

Anyway, I know this is supposed to be a positive space, and that is it’s main aim, but I hope you won’t mind me having a rant every now and again. Tonight, I need to rant.

I went to London on Wednesday for my new job induction. The other Time To Change regional co-ordinators are awesome and I can’t wait to start working with them (there’s a positive :)) I also got to see my cousin who is in London from New Zealand. We had a lovely dinner together (and a cocktail or three) and the sun was out. It was a great day.

Anyway, for those of you who don’t know, those of us with wheels have to book train travel assistance (just a ramp to help us alight the train) at least 24hrs in advance. I’d booked a certain train, but chatting and cocktails took over so I knew I was going to be late. I got to Euston 10 minutes before my next train home, went to the mobility assistance office and asked if I could have a ramp to said train, but I was told it was “too short notice”. I get that Euston is a busy station, but surely that means they have more people who can aid those of us who need assistance? It would appear not. So, I huffed and puffed and was helped on the next train they decided wasn’t too short notice (half an hour later). I had time to go and buy a coffee while I was waiting so I guess it wasn’t all bad! – See, still trying to keep positive.

It’s just annoying seeing all of those commuters who can run, sprinting across the station two minutes before train is due to depart, making it to the platform and diving onto the train with 30 seconds to spare. They get to be spontaneous, I don’t. Ever. Not where travel is concerned. Usually, I just suck it up. It’s one of those things that you just learn to live with when you use a chair. Train station assistance crew aren’t too fussed about helping those of us with wheels (or any other assistance needs) to be spontaneous. Would you be able to book a train at least 24hrs in advance if you wanted to travel? There’s no such thing as just getting up in the morning and deciding you want to go on the train. It just doesn’t work. Life can get pretty boring and predictable living by this rule, to be honest.

Now, another positive. I have nothing but praise for the travel assistance staff at Birmingham New Street station. Granted, I guess they know me now, but they are always happy to help, even if I turn up early (or late) for my scheduled train. They always endeavour to help me on the next available train. For instance, I got back to Birmingham on Wednesday and needed to get my connecting train to my local station. “It’s OK, we’ve got 4 minutes until the next train, you head up the lift and across to the other platform and I’ll meet you over there” the National Rail worker said to me. This meant I was getting the train 15 minutes earlier than my scheduled train. I would get into bed 15 minutes earlier, and after being out of the house for over 12 hours already and having to get up for work the next morning, I was more than grateful!

That’s it really, just wanted to share my frustration about certain aspects of train travel. I’m sure some of you can relate. Feel free to get in touch or comment to share your stories.

Hope you’ve been enjoying the sunshine if you are able to.

Happy Sunday,

Louise xxx

Time To Change

Hey,

Haven’t got much going on tonight so I thought I’d say hi. There have been a couple of things on my mind lately and decided in therapy today that it would be a good idea to blog about them.

Firstly I’ll start with the slightly negative topic. I’ve realised lately how damn lonely I can get and how easy it is to feel this way. Don’t get my wrong, I have wonderful friends, but most of them have moved away, live far away, are super busy with work or even live in other countries! Most people would probably say I have a busy social life. I agree, I guess I do. I like to plan activities and arrange meet ups with friends, but these only last so long, they have to come to an end. Then the loneliness starts again. I think *all* of my friends would tell you that I’m the friend that texts them the most or expects responses within the hour otherwise I think something is wrong. I appreciate this is a bit excessive, and I am trying to curb my love for texting a little, but it’s difficult. I think it’s verging on an addiction. My friends are good, I’ve had texts that say “sorry it’s taken me a while to reply, I’ve been busy at work, but I don’t hate you…” – that’s the start of the reply from the friends that know I’ll be questioning whether they still like me if they’ve taken longer than half a day to reply. I appreciate that. Thanks, guys. I know I have the best friends, and I love you all. I just wish I saw you, called you, text you, even got to dance with you more often.

So, the title of this blog: ‘Time To Change”. Basically, I’m looking for ideas from fellow text-lovers about how to occupy myself without texting as much. Cheap/no-cost options would be best. Or, how do you entertain yourselves when you’re lonely or when friends are busy (Wheelchair-friendly options, please)?

Secondly, the title of this blog also relates to my new job. A few of you will know, but I thought it was time to publically announce that from April, I will have a paid job with the mental health Charity, Time To Change. I have completed voluntary work with them in the past, delivering my personal experiences of mental health difficulties to children in various schools across the country. Our aim is to reduce stigma and discrimination surrounding mental health issues. They’re not something to be ashamed of (yes, I thought they were initially) and the more of us who speak out about them, hopefully the more people who may feel like they can open up and ask for help if they are struggling. Anyway, in April I start my role as Time To Change Regional Campaigner for the West Midlands. My job will be to create and deliver presentations to young people across the region about mental health issues to try and reduce the stigma and discrimination that unfortunately are still experienced by those of us who have/have had mental health struggles. I will then hopefully then train a variety of young people to talk about mental health in their schools and arrange campaigns to raise awareness. I’m due to have an induction on 5th April and I’m very excited 🙂

Finally, I’m at Naidex (that’s the exhibition where I rode on a segway last year) next week. It’s an event in Birmingham where I finally am part of a majority. Thousands of disabled people come together to explore new facilities/equipment and events that we can all take part in. It’s also a great place to network and chat to people who experience similar things and who just ‘get it’ (quite a rarity). So, check it out if you haven’t already. There are also a range of fantastic speakers who share their success stories and tell you what they’re up to next. I’ve met and heard from some great people there and get some good ideas for this blog. Maybe I’ll even see some of you there. Let me know if you’re attending, I’ll be there on Wednesday 29th March.

Right, that’s it for now. Basically I want to make a few changes and am looking forward to new opportunities coming up soon. Let me know if you have any ideas of hobbies/ activities I could do (maybe something a little different to the norm).

Thanks for reading, hope you’re having a good day.

Louise xxx

Time to Stop Hiding Away (Inspired by Giovanna Fletcher)

Hi Everyone,

How is it March already?! I’m sure the days and months go quicker as you get older! That’s how it feels, anyway.

So, this post has been inspired by a book tour evening I attended last night: a Q&A session with the wonderful Giovanna Fletcher. I’ve wanted to meet her for years (my closest friends have heard me talk of wanting to meet Gi for a number of year, I *love* her books!) so I was delighted when I realised she was doing a meet & greet and book signing after the talk 🙂 ❤

Anyway, Gi has talked pretty openly in a couple of her blogs and vlogs about negative body image. As her new book ,’Happy Mum Happy Baby’, tells her story of motherhood, she spoke for a while last night about not liking her changing body very much during pregnancy (or before) . However, one or two events post-pregnancy helped her to realise that her body was “nothing short of a walking miracle” for growing two children.

I’m not pregnant nor am I a Mum (and I don’t intend to be for a very long time, if ever), but I can really relate to not liking my body and constantly criticising it. So I thought it was about time I talked about it, accepted it, and realised it makes me who I am. It hasn’t served me too badly over the past 26years, I guess.

Most of you will know that I have Cerebral Palsy. A condition I’ve had since birth. It  means that my legs don’t work properly and so I use a wheelchair. However, what some of you might not realise is that I can only use my right hand. My left hand has a mind of its own and doesn’t really do much. Now, I’ve never liked it. When I was younger I called it my ‘mankey hand’ and certainly never wanted it in any photos. For instance, I won a competition in my first year of high school and my picture was put in the local paper. My teacher then wanted to put the article (including picture) on display in school and I stayed late at the end of the day to ensure she covered my left hand up when displaying the picture. “Nobody will even notice”, she told me. But it didn’t help, I still insisted, I *really* didn’t want my ‘bad’ hand being seen.

Back to last night…after the book signing (and photos) with Gi, the first thing I did when I got home was edit the photos to put up on social media. It was only today when I thought about writing this post that I realised I had cropped my ‘mankey hand’ out of the pictures to put on Instagram.

However, at the end of this post I’ve decided to share the unedited version. I am me, and I matter, even with all my flaws. Actually, people don’t care. Everyone else is *far* too preoccupied with what they look like themselves to be concerned with what I’m wearing, whether I look fat , or if my ‘bad’ hand looks particularly ‘mankey’ today.

Staying on the Fletcher theme, and to quote my favourite Mcfly Song:  “We All Look The Same In The Dark” 😀 ❤

I am me. All the body image issues I had as a teenager (and still do have sometimes) took so much from me. They stopped me having fun and wearing what I wanted to at times. They took my health, my mood, and sometimes my friendships.  I’ve now realised that it *really* isn’t worth it. I’d much rather be remembered for being a nice person who gave a damn about people and tried to do some good.

We’re all individual and beautiful (cliche as it sounds) flaws and all. I felt like I needed to share these thoughts. Big thanks to Gi for inspiring this post.

 

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So you can’t even see my hand really, I tend to automatically cover it with my ‘good’ hand in photos. Will try to stop this

Thanks for reading

Love,

Louise

xxx

The Long Way Around

Hey everyone,

Sorry I’ve not been around for a while, lots of stuff has been happening and I’ve been trying to show myself a bit more self-care (as is in my ethical guidelines now I’m officially a trainee psychotherapist – more on that later).

So I guess the main (negative) thing that has kept me away for so long is the breakdown of a significant friendship. One that really mattered to me, one where I really cared and I naively thought they did too. In actual fact, they didn’t and we’ve now gone from daily contact to them not wanting to speak to me again. It sucks, but maybe no contact will help me to get over it quicker.

This leads me to the more prominent point of this post: having to go the long way round. So, my fellow ‘Wheelies’ (one for Helen there <3) will know that to get to a lot of the same places that our non-wheelchair user friends do, we often have to go the long way around. This often involves going up/down some long ass ramp whereas those who have better legs than us can go up/down steps in super quick time (that’s what it feels like to me anyway, especially when my chair is having a slow day). Anyway, I don’t mean to moan too much. I am grateful to those places that now have ramps, because unfortunately they are rarer than some people who do not have to think about access might realise.

Then there’s my chosen career: Psychotherapy. It’s bloody hard, I tell you, but I feel like I’m really doing the right thing. I love client work. I feel like I’ve finally found my place and that is a wonderful feeling. However, sometimes we have to take the long way around. Some of my peers and I came to the realisation that we may not graduate at the same time due to all having different needs, placement hours, and needing to do the right thing ethically to look after ourselves and others. Yes, this might be tough, but I am proud that we’re all in a place now that we realise we need to put ourselves first and to look after ourselves in the appropriate way to be the best therapists we can be for ourselves, our placements, and ultimately our clients.

I guess what I’m trying to say is that sometimes in life you have to go the long way around to get where you want to go. Yes, it can be frustrating, upsetting and sometimes confusing, but there’s a reason for it, and if you want it, you will get there in the end. I have been struggling to ‘get over’ this friendship that (I thought) I had. Trying to fit my placement and uni work in amongst working part-time to fund my course has been tough. But I will get there, and I will make it work because I’m determined to follow this path to get to where I want to go. To be a better version of me. I’d say I’m about a quarter of the way up the ramp right now and I just need to keep going.

For instance, as much as I don’t want to be, I’m still taking anti-depressant medication, after trying twice before to come off it.One day I hope to not be taking medication, but I’m not rushing myself to come off it anymore because if it’s helping me right now, why make things more difficult for myself?

Talking about this is my reference to Time To Talk day that happened last week. Time to Change are a wonderful charity trying to reduce the stigma surrounding mental health issues by encouraging people to talk about how they’re feeling and also encouraging people to actually listen to people in return. The more people that speak out the better, in my opinion. Check out the Time to Change website if you haven’t already. Or, the campaign video: ‘The Stand Up Kid’ on Youtube is my personal favourite.

I often give myself a hard time because most of my friends are in relationships; are living with a partner; have their job sorted, and have their shit together (for want of a better phrase) and I’m sat here, in my parents’ house ‘moaning’ about it on a blog. I guess this is another example of me taking the long way around. That’s what I try to tell myself anyway, I want to get it right.

*I don’t mean to moan, of course I want my friends to me happy, but I compare myself to others too much and it’s topics like this where it’s especially unhelpful.*

Finally,

I know I’ve said it before but I feel like I need to reiterate that I have the most wonderfully loving and supportive family friends that have helped me, and continue to help me through the dark times. Sometimes they even come with me on the long-way-around ramp, they moan with me, they tell me to man up and get on with it. That’s what gets me through. Some of them I don’t see as much as I would like, some of them are too far across the country or across the world, but I know they’re there. And that makes the world of difference.

And to my newest group of friends, my psychotherapy ladies, there isn’t a nicer, more kind-hearted, funny and supportive group of people I’d wish to be on this rollercoaster of an anxiety train that we call training with. I love you all enormously!

Anyway, I think that’s it for today. Please get in touch if you’d like to share your stories of taking the long way around to get to your chosen destination. Ideally success stories, but if you’re still working to get there, share those too. We can encourage each other.

Thanks for reading, and just in case I’ve not said it already, HAPPY 2017!

Louise xxx

 

 

2016 Round Up: Believing in the Impossible

Hey everyone,

I’m back. Just thought that as we’re coming to the end of 2016 I would do a round up and show myself in the blogging world again. 2016 has been one unusual year, filled with lots of ups and downs (like all other years, I guess), but I’d say it’s ending on a positive note.

I don’t want to talk too much about politics, but I guess I couldn’t write this blog without mentioning the shocking events of June and November with Brexit and the new President Elect and what that means for those of us with ‘disability issues’ (as it’s affectionately known between my friends and I). I’m nervous about what the future holds for those of us who use wheelchairs or are just in some way ‘different’ (though surely that’s everyone?), but for now, I’m trying not to think too much about it. Thinking about the title of this post, maybe that was the impossible happening 😦

I also received my long-awaited letter this week from DWP telling me that DLA was stopping and if I wanted to continue with disability benefit I should call up to be put on the list to claim for Personal Independence Payment. Merry Christmas, Lou. Now, as much as I would like not to have to claim benefits, I would not be able to afford my car without it, and my car is my pride and joy! Over the last 3 years it has given me independence that just  a few years ago I could only dream of. Try taking my car off me and I will fight with every bone in my body to not let that happen!

I have to talk about the Rio Paralympics. Wasn’t it wonderful?! I’m lucky enough to know a couple of the competitors, having studied at Loughborough University, so  I have just a slight insight into how hard they train and work during the 4 year cycle. And they came away second in the medal table! SECOND! They totally believed the impossible was possible. I was (and still am) so proud of ParalympicsGB and TeamGB. It gave us something positive to talk about for the summer months amongst all the sad news around the world. For about 2 weeks I was even motivated to exercise again. Unfortunately that didn’t last long, a 2017 resolution for me maybe? Watch this space…

“Believe in the Impossible” was a titled inspired by a quote from one of Tom Fletcher’s Vlogs. In case you don’t know, I’m slightly obsessed with McFly/McBusted and also love watching Tom, Gi and Carrie’s Vlogs. Tom has recently written a book, ‘The Christmasaurus’ and I was SO excited when I realised that the main character (a young boy) is a wheelchair user. I can’t think of any other books that have this (let me know if you can think of any) and it made me so happy. Maybe this will help young wheelchair users feel more ‘normal’. The Christmasaurus Live is also happening in the theatre next Christmas and I was also really happy when a friend informed me that the actor playing the main character is actually a wheelchair user. Raising the profile of young wheelchair users, this can only be a good thing! Thank you, Tom 🙂

I’ve been really busy with work and university. I’m an MSc student now and although it’s only part time is taking up most of my time. Will be starting a counselling placement in January. Nervous, but excited. 2017 will be busy, but I’m looking forward to it.

Well, I’ll sign off now. Thanks for reading.

Wishing you all a very Merry Christmas and a happy and healthy 2017,

Louise

 

 

An Update

Hi Everyone,

I’m very sorry it’s been so long since I’ve posted, life has been super busy recently (though I do realise that’s no excuse)!

A few things to update you on:

  1. Last month, we were invited to The Student Wordsmith Awards Night at Loughborough University. It was a great night with lots of wonderful guest speakers showcasing their poetry. The winner of our poem was also crowned. Congratulations, Lizzie! I shall upload her winning poem in due course.

2. I went to Naidex show at the end of April at the NEC in Birmingham. It’s about the 6th time I’ve been now and I love it! There are always great speakers sharing their stories (this year it was Martyn Sibley on the day I attended). He’s co-founded Disability Horizons, for disabled people to share their experiences of access when travelling. Go check it out! You may even see me writing a piece for their site in the near future!

I also had a go on a seated Segway, which was very cool. If I’m feeling brave later, I might tweet a picture. Oh, and I was lucky enough to meet GB Boccia star, Nigel Murray, and learn some tips about how to play.

Let me know if any of you have any of you have been to Naidex and what you think of it. We want to hear all about your experiences!

3. Finally, I know we’re supposed to be sharing positive stories, but we’re also about raising awareness. With that in mind, Tanni Grey-Thompson has decided to use #inaccessible when she’s out-and-about and finds a disabled toilet that she can’t get into/ has been used to store things/ is generally not fit to use. I thought we could join in with this, I’m sure  we’ve all had those experiences. Let me know in the comments or use the hashtag on Twitter. That would be great.

I also thought we could tweet about it if we’ve found disabled toilets that are particularly helpful. For instance, my local M&S now has two disabled toilets next to each other: one for left-hand transfer & one for right-hand transfer. The doors are labelled accordingly, how great is that?! I shall RT the picture later, go check out @Head_overwheels on Twitter (if you haven’t already).

Do let is know your positive access stories as well as not-so positive ones. It’s always good to share the positives too 🙂

Hope you’re all well. I should be more available on here over the summer as work calms down a bit.  We also have the Paralympics in Rio to look forward to, YAY! 😊

Louise