Updates

I seem to have started many of my last few posts with apologies for not posting for a while, and this one looks to be no different! I've attempted to blog a couple of times over the past few days, but I've got so much to fill you in on that it's been a bit daunting. However, I finally have enough time and energy to get you up to speed on what's been happening in my life over the past few weeks.

1. Summer is here! I moved back home on Friday for the holidays and won't be going back to Lancaster until (hopefully, barring any resits) at least the end of September or the beginning of October. My exams went as well as could be hoped, so am trying to push the thought of them to the back of my mind until 14th July which is when I get my results. Fingers crossed I will have done well! It also means that I'm finally free of my problem volunteer, here's hoping that I will get some great volunteers next year.
2. My brother's wedding was last weekend (the 11th). It was a really amazing day and will remembered for being so special and a great big party. I will try and do a dedicated wedding post over the next few days with photos, if anyone is interested?
3. I go to London for my work experience a week on Saturday. I will be working for three days, so have the rest of the time to do some touristy bits and bobs and hopefully see a show. Any recommendations for places to go to?
4. I got a position on my student's union for next term - Liberation Campaigns Officer. You might remember me mentioning this a while back and I decided to go for it. I won by over one hundred votes which is pretty amazing considering I don't consider myself very well known. If you're interested in reading my manifesto, take a look at the Facebook event I set up here.
5. I also mentioned in that post that I was considering applying for a tv thing called Battlefront. I did apply with one of my Trailblazer friends, but I got a call today saying that we weren't chosen. I'm not too disappointed as they had tons of applications and wasn't really expecting to be picked - of course it would have been nice! - but I'm glad we tried, as nothing ventured, nothing gained, right?

Sorry if this post has bored you to death, hehe, and I will hopefully be writing something more interesting soon!

Spoon theory

I feel bad that yet again I've not posted in a while, but with revision, exams, wedding prep and more volunteer trouble, I just haven't had the "spoons" to be able to write anything.

"What are spoons?" I hear you ask?

I touched on this briefly early on in my blogging 'career' in my post about defining tiredness but I guess now is a good time to go into it in more detail.

The term "spoons" comes from Christine Miserandino's Spoon Theory in which she talks about her life with Lupus; you should definitely check out this link if you haven't already, it's very insightful and puts into words what a lot of people with chronic disability go through everyday.


For me, I do have to ration my "spoons" to make sure I make it through the day. Even getting a shower, sitting in my wheelchair too long, or just wearing uncomfortable clothes uses up spoons I could be using to go out, read a book, write a blog or any of the other things I enjoy doing. It's definitely a balancing act between making the most of opportunities that come up and enjoying life and making sure that I keep well. For me, if I use up my spoons, or overspend one day then I pay for it with next day's spoons, meaning I'm completely exhausted. Conversely, if I know I have a spoon-intensive day coming up, I'll try and save some up in the days before.


I hope this gives you an insight into my life a little, it's sometimes difficult to explain these things, but I hope I've done it justice. Thanks to Emily Ruth for inspiring today's post; she's also talked about spoon theory from her perspective today, it's a really interesting post and definitely worth a spoon to read it! :)

Opportunities...

I have a couple of things which have popped up in the last week or so which I'm interested in getting involved in, but not sure if I'm brave enough! If I talk you through them, could you let me know what you think and whether I should get involved?

1. Battlefront - it's a Channel 4 thing looking for campaigners. It looks like a great opportunity to raise awareness and get some experience. I could either apply alone or with some Trailblazers.
2. There's some Cross-Campus Elections going on in a few weeks at my university student union for Officer positions for next year...there's a couple of campaign ones which look interesting and it would be a great chance to make some changes benefitting students like me.

What do you guys think? I'd be really interested in your feedback and support!

Musings...

Alone

Surrounded by a sea of faces

Who stare at me

Judge me

Pity me

Before they even know my name

Why don't they reach out

Smile

Look like they understand

See the real me

Not the wheelchair

Not the disabled body

Just me

(Sorry, I am horrifically bad at poetry!)

New look!

Ok, this is going to be a bit of a disjointed post today as I have lots of little unrelated bits of information to fill you in about:

1. New look for my blog - I did like my old layout, but it was just a bit too pink for me to be entirely comfortable with it. I'm quite proud of my new layout as I did a lot of the images and coding myself. I hope you like it too - let me know what you think in the comments!
2. Blogger broke - I'm sure most of you know Blogger was down half of yesterday and half of today - hence no Tasty Thursday this week (I didn't think Tasty Thiday had the same ring to it!)
3. Revision - not going fantastically, I'm getting really nervous about my first exam on Monday now...I just hope I don't panic in the exam, then I should hopefully be okay.
4. My Bipap broke again on Wednesday night - it's been overheating a bit over the past couple of months, I've kept sending it to be fixed but it just keeps doing it again after a couple of weeks - very annoying! Because I use it at night, I can't get anyone out to fix it until the following day, luckily my wheelchair charger uses the same connector so we were able to rig it up to work overnight until I could get the engineer (or Bipap man as I refer to them) to come out and look at it the next morning. I've got another loaner machine to use until mine is fixed, or, hopefully, replaced.
5. I'm having a few problems with one of my volunteers - I'm meant to be coming back to Lancaster for a week after my brother's wedding to pack up my things and meet with my dissertation supervisor. I'd already moved my end date for her - her mum and stepdad are going on holiday so she needs to be home to look after her grandma. However, her birthday is that weekend, and she said she doesn't want to come back after it, and if she did she would want me to pay her return fare! It was not a lot of money (around £10), so I was going to pay it, but my other volunteer and carer have both told me not to, as she is being out of order - the rules say that the project fund only pay for the journeys at the beginning and end of the project, and the university holidays. I've spoken to my volunteer manager, as has my volunteer (not the one I am having problems with), and hopefully she will sort it. I've already said to her that I need her to come back, but she fobbed me off by saying we need to "discuss" it - what is there to discuss?! I'm just worried she'll freak out (she is quite a confrontational person) that I have gone to the manager behind her back, but I have exams coming up and enough stress to deal with, right? Any thoughts on handling volatile people?

How has your week been?

Blogging community

I've only been blogging for around 2 months now, but already I feel welcomed by the blogging community. Through ChronicBabe.com and their bloggers' group, and people who's blogs I've stumbled upon along the way, I've already 'met' some wonderful, inspiring bloggers who've offered me support, friendship and advice during my short time as a blogger, and for this I'm truly grateful. I started my blog during a time which has been quite emotionally difficult for me, in order for me to work through my feelings, and I think it's good for me to do this. I could've just written down my thoughts, problems and worries privately, but I'm so glad I decided to start a blog; my followers have made me realise that I'm not alone. You've also helped me take a step back and look for and write about the positive things...so thank you!


In a similar vein, a couple of weeks ago, the lovely Rosie gave me a blog award. For this, I'm supposed to:

1. Thank the person who gave you the award.
2. Write a post about it.
3. Pass it on to 12 blogs that you think really deserve it.
4. Insert the link to their blog.
5. Send them a message to tell them about it.

So a big thanks to Rosie for giving me this award! I started my blogging journey shortly after Rosie, and her blog is one of my favourite reads at the moment. She has a number of different features on the go (I don't know how she manages to keep track!) and always has something interesting and inspiring to say. She's also a really lovely person who I keep in touch with regularly, and is one of the bloggers I refer to above.

My favourite blogs at the moment are:

1. Uncommon Sense 
2. Assimilate This 
3. 2nd chance @ life? 
4. Infectiously Optimistic 
5. What Sadie Did 
6.  Chronically Creative
7. Phylor's Blog 
8. Creaky Girl 
9. Living for Lucy 
10.  Touch and Tickle
11. A Lovely Little World 
12. Welcome to my world 

How has everyone's weekend been? Unfortunately mine has been filled with a phonetics essay which is due in tomorrow. I finished it a couple of hours ago, so am just about to go back over it, do references etc. My first exam is a week tomorrow, in a weird way I'm actually looking forward to getting it out of the way!

10 reasons why being disabled is cool

I've been feeling a bit down this week, back at uni after an amazing Easter break has been a downer really. I just feel so alone here, I feel as if I'm balancing on a tightrope trying to keep my emotions in check and not break down into tears - I've been really close a few times and I've only been back 4 days. I'm so close to just packing it all in, but I don't know what I'd do if I wasn't here, and I need a degree to do all the jobs I want to do :( so it's a bit of a catch 22 situation. I'm just taking it one day at a time at the moment, I have a lot of deadlines coming up, so that's keeping me occupied for the moment...just trying to keep busy I guess!

In trying to cheer myself up, I thought I'd compile a bit of a light-hearted list on why being disabled (specifically my disability and how it affects me, though obviously there's overlap with other disabilities/conditions) is cool* (or you might just think I'm a bit of a freak!). So without further ado, being disabled is cool because:

1. ...you feel like a celebrity because you get stared at so much.
2. ...your shoulder dislocates spontaneously whilst in a conversation with a friend, and, without flinching or stopping the conversation, you pop it back in with one swift motion whilst said friend looks on in horror/disgust.
3. ...you have an encyclopaedic knowledge of pain relief, and your friends ask you to advise them on the best painkiller to take by describing their pain to you.
4.  ...you have enough pain relief in your medicine cupboard to sedate an elephant (according to my dad, anyway!)
5. ...despite never being able to walk, you've sprained your ankles 6 times...twice which you're not sure how it happened.
6. ...your emergency pain relief kit consists of paracetamol, ibuprofen, codeine and chocolate buttons.
7. ...like your friends, you sometimes wake up with random injuries you're not sure how they happened...unlike your friends, you were not drinking the night before and went to bed as normal.
8. ...your best friend plays 'guess where Catherine's internal organs are because of her scoliosis'
9. ...and you join in.
10. ...you can never decide whether you're hot or cold because each part of your body is a different temperature, ranging from boiling hot to ice cold.

*Disclaimer: I hope my readers see the intention in which this was written in is just meant to be a bit of lighthearted humourous fun. In no way do I want to make fun of any disabilities or symptoms, as I know from personal experience how debilitating they are and how hurtful it can be to be mocked.

Tasty Thursdays

I've decided to christen Thursdays Tasty Thursdays in order to share some of my favourite recipes and treats. For my first Tasty Thursday, I'm going to share something I made last summer at uni with one of my volunteers.

Cake pops (from Bakerella)

As you can see from the website linked above, you can get really creative with your cake pops, depending on your skill and patience. For our first attempt though, we decided to keep it simple!

The finished product

You will need:

• Sponge cake (we used ready-made plain sponge cake from the supermarket, but you could make your own in whatever flavour you fancy)
• Buttercream icing (Again, we were lazy and used ready-made plain buttercream icing/frosting, but like before you can make your own in whatever flavour you like)
•  Decorations: chocolate, icing pens etc
• Kebab sticks/lollipop sticks
• Something you can use to stand the sticks in (we found a chunk of polystyrene which worked quite well)

Instructions: 

1. Chop up the sponge cake into chunks and combine it with the buttercream icing - you're aiming for a mouldable consistency which isn't too wet.

Me chopping the cake (with ridiculously frizzy hair, sorry!)

2. Mould into balls and spear on a stick, using a touch of melted chocolate (whatever type you're using to coat the entire pop). We used the non-pointy end of the kebab stick so we could use the pointy end to stand them in the polystyrene.

3. Chill. We were impatient so shoved them in the freezer for 20 minutes or so, and they seemed to be okay.

4. Decorate. We melted some white chocolate in a shallow bowl to coat them and then drizzled some milk chocolate on some for a marbled effect. We also used icing pens to decorate. The weight of the chocolate is sometimes an issue at this point, so keep your fingers crossed they stay on the sticks, as we had a few casualties!

Starting to decorate

Happy cake pop!

Cake pop casualty :(

Punk!

Happy baking!

Remembering...

Monday (25th April) would have been my mother's 61st birthday. She passed away almost seven years ago from cancer. I was only 13. I know it's hard to lose your mum at any age, but it really hit me hard. She was not just my mum; she was my only carer, my best friend, my advisor. I didn't know how I was going to cope without her.

Seven years on, I still think about her and miss her desperately, but not as much as in the early days. It does make me a bit sad to think that I don't think of her everyday, but I know she would want me to get on with my life and not dwell on her passing too much. When she passed away, I was worried that I would forget her; her smell, the feel of her skin, her laugh, her mannerisms. But I don't think I'll ever forget. I see her everywhere; a song on the radio, a certain smell, a snippet of conversation. They all bring back wonderful memories of her and our life together.

I think I've been thinking about her a lot more lately as my brother's wedding is getting closer. It will be a difficult day without Mum there, but I know she would have been so incredibly proud of Jammy and will be there in spirit.

Mum's favourite flower

Happy birthday Mum! I love you and miss you so very much.

Urgh...

Today has not been the best day for me. I'm such a procrastinator, but with 3 essays due in the first few weeks of May, the pressure is really starting to get to me. I'm currently struggling my way through essay number 1 (the one due in first, two weeks today) and at the end of play today, I've gone from around 400 to 1039/2000 words. This may sound like a lot to some people but I'm so used to writing around 1000-1500 words a day once I've done all the research needed. I think I've got writer's block!

The worrying thing is though, I don't feel THAT stressed...I don't know if I'm in denial about it all or if I just don't care. I'm so fed up of this degree, I'm so looking forward to next June when it's all over and I can get on with what I want to do in life (hopefully). I really need to knuckle down tomorrow though, I've got quite a lot on this weekend and next week; my brother and fiancee are home this weekend to sort out wedding stuff, some of which I need to go to, Tuesday I am taking my sister to get a dress for the wedding, then Friday I have a royal wedding BBQ at my friend's house and then Sunday I go back to Lancaster. So I have, from today, about 8 days to do around 5000 words, as well as packing to go back to uni....eep!

I had some good news yesterday though. My work experience at Trailblazers in London has been confirmed! I'll be there for the first week in July and I'm really excited for it!

Hope everyone is well and enjoying some sunny weather, it's been really sunny here for the time of year. I just hope it continues for my brother's wedding, as the ceremony is outside!

Ear pain

I realise this is not the most exciting topic to broach, so apologies if it's not your cup of tea! However, I guess I should detail all aspects of my life, from the interesting to the mundane!

Now for an exciting picture of an ear to help me explain my tale of woe:

Basically, I've developed a sort of pressure sore on the helix and antihelix of my ear (see picture). It's been there a while, as due to my scoliosis, I can only lie on one side to sleep, as I have nightmares/sleep paralysis attacks if I sleep on my back (sounds weird, but apparently it's not mega uncommon). However, I think something must have exacerbated it as it's suddenly really painful - I had no idea how painful a tiny sore could be! I have had it before, but I can't remember how I treated it...do I put cream on it? Do I keep it dry? Do I try and find a dressing for it? I've seen these ear pillows, like a donut with a hole in for the ear, but I don't know anyone crafty enough to make me one, and they don't seem to be sold anywhere.

If anyone has any suggestions, they would be greatly appreciated!

Katy Perry!!

I got home yesterday afternoon from a great weekend away which really lifted my spirits. I went down to Birmingham on Saturday with my dad to spend a bit of time with my friend and carer from uni, and her mum and dad. We'd (me, my friend and her mum) booked to see Katy Perry about six months ago for the Monday night, but since I'm at home for Easter we decided to make a bit of a weekend of it. And it was lovely! Pretty chilled, but it was really nice to spend time away from the pressure of uni workload and carer issues and have a laugh with people I really care about.

Small things

I've been a little down lately (nothing in particular, just lots of little things building up), so I decided to make a list of all the things that make me smile.

Firstly, the important stuff, which go without saying:

1. My friends. I don't have the biggest group of friends, but the ones I have are amazing, always there to make me smile, listen to me vent and love me for who I am. I'm getting to the point now where I am being more choosy with who I spend time with; in my opinion, life's too short to spend time with negative people, or people who make you unhappy, so I'd rather have a few close mates who make me happy rather than a bunch of people who I don't really 'click' with.

2. My family. I know you can't pick your family, but I think I did pretty well with mine! Sarcastic and mental, but I know they have my back and will support me no matter what I do.

And now for the small things:

1.  Sunshine. I always feel more upbeat when it's sunny, even if it's not very warm outside. We don't get many sunny days where I live, so we definitely make the most of them!
2. Sleeping in a freshly laundered bed. I love the smell and feel of clean sheets on my bed and always feel I sleep better, don't know if that's psychological or not?
3. Hearing an old favourite song on the radio - the cheesier the better! Yes, I'm talking Steps, Spice Girls, S Club 7, Bewitched, Aqua and so on (with dance moves as applicable)!
4. People watching, making up stories about who people are and what their life is like.
5. Planning something special (doesn't have to be big or expensive) not too far into the future (like 2 or 3 weeks away) so I have something positive to aim for when I'm finding things tough.

Sorry for the sentimental soppiness, but it has cheered me up! Promise I'll be back to my cynical self next time ;)

Defining tiredness

I've been finding it difficult lately explaining to people that I can't do things sometimes because I am too tired. It is frustrating sometimes, as I'm not sure if they think I am making excuses in order to get out of doing something.

However, then I realised that maybe it's because their definition of tiredness is different than mine. I guess I live with a level of tiredness everyday (some might call it fatigue I suppose) without really noticing it - I know my limits relatively well and that I can only do so many things in one day, unless I want to write off a chunk of the following day. This is my 'normal', but it probably isn't to other people! When I'm too tired to do something, it literally means I'm too physically exhausted to even sit up, whereas I guess for other people it just means that they need to drink a coffee or go to bed an hour early.

It's still hard to try and get that across to some people; I try so hard to be 'normal' and just like everyone else, I suppose sometimes they forget that my body doesn't really play by the same rules as theirs does!

Bad blogger!

Sorry I haven't posted in a while, I guess life ran away from me a bit! I caught a stomach bug the day after Pancake Day, which left me out of sorts for about a week, which means I am now mad busy trying to get as much work done before I finish for Easter - I have an essay due in the day I go home, then another three after the holidays so I'm hoping to get as much done as I can in the next week and a half so I can actually have some fun and see friends over the holidays rather than being chained to my laptop!

I don't really have much else to report today, I haven't been up to much apart from work, sleep, eat and TV! Roll on Easter is all I can say! :)

Justifying my existence...

Through the Trailblazers' Facebook page (the disability campaign group I volunteer with), I came across this (skip to 26:35 for the relevant part). For people reading this after the link expires, it's an interview with a mother of a severely disabled child, who was so desperate for extra respite that she phoned social services to take her into care, as she just couldn't cope any more (google 'Riven Vincent' for a huge number of news stories about it).

The part of the interview which got me riled up was a listener, who I assumed at the time had phoned in to put forward her viewpoint. She began making comments about how unproductive the daughter's life would be and that it was an unnecessary burden on the taxpayer to pay for her care. She even got to the point of eugenics, implying that in 'olden days' the midwive would have smothered the child if it was born severely disabled. The mother then had to basically defend her daughter's existence on live radio, saying that she was intelligent and able to lead a fulfilled life, drawing similarities abilities-wise between her and Stephen Hawkings. The listener then had the audacity to say, "Well he's not really done anything of worth, has he?"!!!

I think what really tipped me over the edge and led me to make a complaint to the BBC was that this woman was making these comments before the show on its Facebook feed, and the presenter begged her, even baited her to come onto the show, knowing full well what she was going to say. I'm all for free speech, but giving her a platform and basically encouraging these extremist views is completely insensitive, and in my opinion was just done for its shock factor. I really feel for the mother, who should not have been put in the position she was, she put her case forward articulately and was able to make the woman look the fool she was.

I think this really hits home for me because I am what some people would class as 'severely disabled', yet I feel I have an excellent quality of life and can give back to society as much as any able bodied person. Who is she to dictate what 'quality of life' is?

Anyway, rant over. In other news I was rudely awoken this morning by the District Nurse at 8.45am to check my pressure areas. I had booked my appointment for 10am, but there must have been some breakdown in communication between the Sister and the nurse who came, as she thought it was at 9am. I'm thankful in that it gave me a reason to get me up and out of bed relatively early, though I've not been massively productive.

Enjoy Pancake Day and International Women's Day! I will try to post some pancake related pictures later. I'm also taking up blogging for Lent, even though I've started a little early, I will try and keep it up through Lent and beyond!

UPDATE: Sorry it's so late, but here is my pancake - nutella, strawberries, banana and squirty cream. Blooming lovely, but did make me feel a bit sick afterwards!