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Sunday, 30 March 2014

Mother's Day

"Insanity runs in my family. 
It practically gallops."
Cary Grant

Today was Mother's Day, in the UK at least. I'm not sure when the rest of the world celebrates it. I was very unimaginative and ended up just giving my mum money. I always want to buy her something, but she's so particular about stuff. For her birthday a few weeks ago I asked her if she wanted me to take her and my sister out for lunch, spend some time together. She said no, because that would be wasted on her and she wanted something she could keep. Again.. I ended up just giving her money, because it's really hard to find something to buy someone who seems to have everything. So I wrote on her Mother's Day card,

"To Mum, thank you for always being there. 
I know money seems super impersonal, 
but I know nobody picks your presents better than you. 
Love Sara Bloo"

I think she found it funny. My dad picked the card for me, and it was a card/wall hanging. The bit you wrote on was a tea pot and then dangling from it was three cups. It was kinda cute. I'm not a big lover of cards. I mean I like them and all, but I think they're also a bit of a waste. Though my mum is one of those people who likes to keep them, so it's not so bad. She's very sentimental. 

We were invited out to dinner with my dad's side of the family to celebrate Mother's Day with my granny. I felt a little bad, like my mum's day was being taken over, but my granny hasn't been very well and doesn't really get out much anymore. So I really wanted to make this one count. It wasn't so bad because my mum agreed to come along, which at first she said she didn't want to. 

It was at my granny's favourite restaurant we usually go to. My granny's memory is going and she gets very confused about where she is and such, but I think the familiarity helped. She was in great form and she didn't get confused or anything. We had her over for dinner just after new year and we still had our Christmas tree up. She got so confused because she doesn't come round to our house often, she thought it was Christmas Day. 

But like I said, she was in great form today. Though she has kind of lost her tact or censor. For example she has it in her head that one of her grand children are dating a Muslim, and thus asks about it every time she see's us. Usually my sister. Which isn't so bad when you're in the privacy of your own home, but not so great when you're in public and she's saying "Hey, I heard you were dating a Muslim. Are you dating a Muslim?" repeatedly. And pointing at people and asking where she knew them from. Still, I guess it's all alright so long as she has a good time. And it really was a great time, there was eleven of us in total. Granny, granda, mum, dad, my dads two brother's and their partners, my aunt Karen, Eva and I. It's not often we get together like that. My granda was a little bummed out there was no network in the restaurant and couldn't entertain himself with his iPhone, so he amused himself when my granny went to the bathroom and he hid her dessert and told her she never ordered any. My poor granny. The night was also almost ruined for my granny when the restaurant failed to give her a biscuit with her tea. She said, "how can they expect anyone to drink tea without a biscuit!" luckily my aunt saved the day when she produced a biscuit from her handbag.

The only down side to the evening for me was that I couldn't really eat anything. I almost choked a couple of times and it really put me off, I ended up bringing my whole main course home with me. I'm really getting fed up with this choking thing. It's fast becoming my least favourite thing about my Muscular Dystrophy. Luckily the atmosphere made up for the fact I couldn't eat. My sister is going into hospital for an operation tomorrow, just a day procedure. I'm going to save my dinner for when I get home, so my parents don't have to cook for me. I mean it's fine if I choke on it in the privacy of my own home, at least it's not in public! 

Anyway, it was a really nice day and hopefully my mum and granny think so too. I took some photos you know, for memories sake! Also.. because I was planning on writing this blog entry. Two birds and all. 
My Granny And Granda Tipping

My Mum & Dad

My Sister Eva & I

...My Aunt Karen Being shy

What became of my lovely roast 
turkey and ham and stuffing dinner

Maybe by next year I'll be in my own place, and for Mother's Day I'll be able to invite my mum around to mine for dinner. A girl can dream, right?

Saturday, 29 March 2014

Earth Hour 2014

"The earth is what we all have in common."
Wendell Berry

I decided that I would take part in Earth Hour tonight and I ended up really enjoying it. For those of you who don't know what Earth Hour is, it's a worldwide movement uniting people to protect the planet. It's organised by the World Wildlife Fund. The event is held towards the end of March annually, encouraging individuals, communities households and businesses to turn off their non-essential lights for one hour as a symbol for their commitment to the planet. There is also fundraising efforts for environmental and social projects around the world. For example, all of the money raised through Earth Hour UK will support WWF's work in the Mau Mara Serengeti. I donated £3 to their efforts by texting 'STAR' to 70060

I couldn't persuade the rest of the people in my house to do it, but at 8:15pm my dad heated me some Chinese food and made me a cup of tea. Just before 8:30pm I had some candles lit and I had my bedroom light turned off and I also turned off my laptop, since I felt like having a big bright laptop screen shining was cheating. I enjoyed my food in my dark, candlelit room as I watched the Earth Hour live stream on my phone. They had Sophie Eliss Bexter playing. 

My candle lit dinner. 

My candle lit face.

Once I had finished my food, I did some crocheting. Which was harder than I anticipated, since the candles weren't actually that bright. Speaking of the candles, it was short notice so I had to use whatever candles I available. My sister was kind enough to let me borrow hers. I'm not sure how eco-friendly they are though. I think I'll keep that in mind for next year. 

I've been thinking about the environment quite a bit lately. I think when I move house, I'm going to try and be a lot more eco-friendly. I know you're probably thinking 'why wait?' and I do want to try and start now, but the reality is it's hard when you're not physically capable and living in a house with people who don't even recycle. I guess what I'm saying is, when I move I will be able to exercise the 'my house, my rules' motto. Because I really care so much about the earth and the creatures that live on it, it's about time I started showing it. 

But yes, the hour flew in and it was time to blow out the candles and turn on the lights. And people might say what was the point? What did I achieve by turning off my lights for an hour.. but much the same as with the No Make Up Selfies, I can't deny that it definitely got me thinking. And awareness is the first step to taking action. 

Until next year. 
PS: That last candle was a bitch! 

Mystery Hospital Appointment

"Insert a witty and relevant quote here."
Sara Bloo

I don't think I mentioned this before, but a few weeks ago I received a letter saying I had been referred to a Clinical Geneticist and it asked me to make an appointment. I was a little confused as it didn't say who had referred me or what it was in relation to. I was further confused when I made the appointment and when the appointment letter arrived, it said the location was at Action Cancer House in Belfast. Rather than in the actual City Hospital. I had initially assumed my Muscular Dystrophy specialist had referred me to genetics to see if I could be properly diagnosed. Although I was diagnosed with Congenital Muscular Dystrophy when I was three, I'm now technically undiagnosed as CMD is just an umbrella term for a collection of muscle wasting conditions present at birth that they hadn't properly isolated. Since then they have determined different types within the CMD umbrella and so I guessed it was in relation to that. What threw me was the fact it was at Action Cancer.

We rang the hospital and they told us as I'd thought, that my specialist had in fact referred me and just hadn't bothered to mention it. It just so happened that Action Cancer House was the only place they had to hold the clinic. Apparently a lot of people had been ringing, wondering why they'd been referred to Action Cancer too.

Today was the appointment. I was still a little apprehensive about going, because even though they'd confirmed it was in relation to my MD.. I still felt weird about it being at Action Cancer House. I don't know, I guess it was a bit irrational. I was also nervous because if they were going to say they had to do a muscle biopsy to be able to diagnose me, I wasn't sure I wanted that. It felt like a big thing to go through, just to have a label slapped on me. A diagnosis wasn't really going to change anything, but at the same time.. it also felt like a big thing to opt out of.

My 'I don't want to go to this appointment' face before we set off on the journey to Belfast.

My dad and I set off around 2pm, and the appointment was at 2:45pm. Gosh, the journey was rough. Back in October I got my first wheelchair accessible vehicle and for some reason, the motion whilst sitting in my wheelchair doesn't agree with me sometimes. When we got there, we didn't have to wait too long to be called. I was a little relieved when it turned out to be a doctor I recognised. 

This is me signing the book I was in with two doctors from the muscle clinic I attend. The doctor in the background is the doctor I seen today. I must be about eight or nine here.

Although I recognised him, he didn't seem to recognise me. I guess I don't make a big impression on everyone I meet. We went into a little doctors office and finally he filled me in on why I was there. Apparently my specialist had sent some of my muscle to England for some tests. He asked if I'd had a muscle biopsy recently and I said no, the only muscle they would have from me would have been from before I was diagnosed. I couldn't believe they STILL had my muscle from 20 years ago! Isn't there like a use by date on that kind of stuff? I guess not. To be honest, he was speaking really quietly, like he was telling me a secret. So I could barely make out what he was saying, but from what I could make out they found something abnormal to do with collagen in the muscle. I've always suspected I had a collagen deficient type of Muscular Dystrophy and figured that's why I my skin is so fragile and doesn't heal well, I have arthritis in my hip and my other joints feel like they've deteriorated. Basically he wanted to take a blood sample and send it to England to have them check it in relation to the collagen. I'm not actually sure what they were checking for specifically, because he was talking to quiet.. but the gist was that they'd check to see if I had a collagen deficient type of MD and that would take one to two months. He said it was possible whatever they found in the muscle was just a one off or something. He also told me the test they'd be doing on my blood cost over £1000! And to thank goodness for the NHS. If it turns out that the test shows nothing, he said he will then try and persuade them to broaden the scope and test for all the other types while they have my blood there.That could take five to six months because he said it was basically like trying to find a needle in a bunch of haystacks. So in one to six months I may be diagnosed, but he also said there's a chance it could turn out to be none they've isolated so far. I think the chances of me being that unique are slim though. 

I wasn't going to bother asking, but my dad asked if I was diagnosed was there any treatments or anything available. The doctor replied "Oh well, that IS the question! ...No, not yet." Which is what I figured anyway. All being diagnosed will really do is give me a proper label, and possibly give me more of an idea about how things might progress. I'm not sure how I feel about the latter though. I tend to stay away from predictions, because doctors get things wrong a lot. They told my parents I had eighteen months to live when I was twelve and here I am typing this at twenty three. Longest eighteen months of my life! Though he did say a diagnosis might be able to tell us whether there's a chance my children could inherit it. Which I've always been told wouldn't happen, but there was a possibility my sister's could carry the gene and their children could be effected if the father was also a carrier. Both parents have to carry the gene for a child to be born with CMD, but not every child born to carriers will have CMD. I have two able-bodied sisters. In relation to me though, it doesn't matter. I'm not planning to have children anyway. 

So yeah, I was brave and agreed to the blood test. I'm historically not very good with needles. As a child I was a kicker, kicking any nurse that came near me. I've opted out of so many vaccinations, despite being one of those people with underlying illnesses who is urged to get every vaccine going. I've got a lot better in the last couple of years though. My method of coping is looking away and imagining it's my cat Findlay clawing at me. I don't know why that makes it better, but it works. He tried in my left hand first, which hurt a lot and he didn't get any blood. I'm incredibly difficult to get blood out of, but the right hand wasn't as sore and he was able to get blood from it. I was surprised at how dark the blood was. There was a trainee in the room, who sat quietly in the corner. She made a lot of sympathetic faces when I was having blood taken. 

My 'I got blood taken and it hurt' face. You can see the minuscule little speck of  blood where the needle went in. 

All in all, I was only there for about ten or fifteen minutes. Not bad really. Now I guess I have to just wait and see what comes back. I still feel a little weird about getting diagnosed. For the last almost twenty one years I've had the label Congenital Muscular Dystrophy for my disability. I'm used to telling people about it and what it is and how it effects me. And a name seems so unimportant, but it doesn't feel unimportant to me. It feels like a big change to have to get used to telling people I have x type of Muscular Dystrophy, and learning what that specific type means. I've never been good with change, and I guess it feels a bit like ignorance is bliss. Still, change isn't always bad and I will get used to it. I just hope I get one with a cool name, because I have great priorities!

Monday, 24 March 2014

Family Matters

"My family is my strength and my weakness."
Aishwarya Rai Bachchan

I wasn't going to write today (Sunday, even though it's already Monday by the time I'm posting this), but it's the end of a very big week for me and I wanted to give a little update on how things are now. The quote above struck accord with me, because that's how I've really felt this week. On one hand I've had so much support. My sister Eva has been a rock in all of this. She helped me gain the courage to tell my parents what I want, finally call off the adaptations to the house I had been so anxious over and to start the process to hopefully live independently. I'm not sure I could have done it without her, if I'm honest. I know my older sister would be the same if she lived here too. My parents have struggled with it, my dad more so than my mum. And I'd be lying if that hadn't made me doubt myself, because ultimately I love my family and I want them to be happy. That's why even after I started hearing about other's living independently, it took me so long to finally make the push to try and achieve it myself. I didn't want to upset them, and I didn't want arguments. I figured saying and doing nothing was easier for us all. 

And once I made the decision and things were set in motion and having to deal with the fall out, I realised even more how much I rely on my family. Again, I don't know what I would have done without Eva and her reassurance that I was doing the right thing. After the initial shock, my mum has been really supportive and really tried to make me feel better about the fact my parents don't know if they'll get to keep our house. She thinks if they're supposed to keep the house, they will. My mum is a great believer in things are how they're supposed to be. I try to take a leaf out of her book in that respect.

My dad was the real worry. I've always been a daddy's girl. We're very close and he took this whole thing particularly hard. He basically didn't talk to me for four days. I've never felt so tense, awkward and sad. I guess in a weird way I felt let down. I felt like I was starting this really exciting journey and one of my best friends didn't want any part of it, and was holding it against me. It was also worrying because he didn't come out of his room much and he wasn't really eating. My mum was crying because he was holding it against her too, being really quite mean about it. He wanted people to blame, but he also didn't want to talk anything out. 

By Friday he started to talk to me again, it still felt awkward at first though. Things are pretty much back to normal now. I can tell he's trying to be okay with it. On Friday he asked if I'd heard anything, but I could tell he wasn't comfortable talking about it. Since then he's been talking about it more and more. My aunt Karen comes on a Sunday to visit and although I'm not telling many family members about it until I know more, I told her. She was so happy and supportive. She said she thought I did the right thing, and that it had to happen at some point and it was always going to be hard. I think having her here helped my dad talk about it too. 

So yeah, as my family comes to terms with the fact I'm finally trying to gain my independence and the more supportive they are, the more I realise how much strength that support gives me and how weak I feel without it. 

Saturday, 22 March 2014

Super Relaxing Fun Times

"Fun is good."
Dr. Seuss

A truer word never spoken, right? So after a bit of an intense week, my sister and I headed out last night to unwind. Our mission... get drunk. Don't get me wrong, I don't condone drinking your problems away. But I also don't find having a fun night out and getting a little drunk morally objectionable. Regardless whether I feel better today than I did yesterday, last night was awesome. In truth, I'm a little hungover right now... so I'm not quite sure how much sense this post is going to make. Bear with me. 

Eva and I really only frequent one bar called The Goat's Toe, so we like to refer to it as our local. It has everything you need, great drinks, great music (it's awesome for live local talent.. most of the time), an accessible bathroom (believe it or not, those are hard to come by even in this day and age) and probably the most accommodating and friendly staff I've come across. Admittedly when we first started going, I remember my older sister and I went into the accessible bathroom and as many wheelchair users will be familiar with, the bathroom was being used as storage. There was t-shirts, bowls, pint glasses, bucket and mop etc. I'm not going to lie, we may have... borrowed a couple of things as a keepsake. Well, it was the least they could do since we had to work around it all. I think once they realised we'd be there relatively regularly (as well as I'm sure other wheelchair users) they cleared it out and eventually made some repairs and redecorated it. We once almost got locked in because the sliding lock was so stiff, in the end we stopped locking the door and just put my electric wheelchair against it so nobody could come in. We noticed last night that they'd replaced the lock. I wonder if anyone had complained about it or got locked in.

The staff know us a little now, and they're so friendly and helpful. We always sit at the bar because I feel more comfortable raising up high in my chair and sitting like that. Sometimes they'll make sure to get my sister a seat if there's one available. They also look out for me a little when my sister goes to the bathroom or anything. I remember this one time a really drunk guy was being a bit.. too close for comfort and I could see the bar staff watching and one mouthed to me, asking if I was okay. Then one of the door men came around behind the bar and asked if the guy was bothering me. It's nice having people look out for us, because for a long time I was very scared of crowds and drunk people after some bad experiences, so I feel comfortable knowing someone is there. I know some people might find that patronising because the extra attention probably is most likely due to my wheelchair, but it doesn't bother me. If we've been to the bathroom or something and people have taken our space at the bar, they'll even help us through the crowd and clear a space for us and look after our drinks behind the bar. It's usually just my sister and I, so there's nobody else to mind our drinks or space when she has to help me to the bathroom. I'm not the kind of person who usually likes to use my disability to jump the queue, have first preference for seating or space, or have any special treatment or special attention in general, but I make an exception at the bar. Mostly for the fact I feel a lot safer. I'm not very socially confident in general, and I feel like the familiarity with the people there gives me a lot more confidence.

Last night was the first time we've had a night out since New Years Eve, so it was nice getting out. Nothing really out of the ordinary happened. There wasn't that many people in, which Eva figured out is because apparently next week is pay day. The band was pretty good. I mostly judge bands who play in bars by how many songs I know out of the songs they play. The glass collector was talking to us and asked if either of us were creative and Eva said I was. He told me I should bring down some of my stuff, that is not happening though. A girl who worked behind the bar showed us some stuff he'd done, and it was pretty amazing. But yeah, over all it was an awesome night. Really relaxing and there was good craic with some of the bar staff, since they weren't too busy. I took some photos too!

So yeah, I apologise for this not being a very interesting post... still I've written loads. I'm super tired, but I had an awesome night so I wanted to write something about it and I tend to ramble. Today was mostly relaxing. Eva's friend was here, and Eva made us all pancakes and bacon with maple syrup. Great hangover food! Later we went and visited my grandparents. My granny hasn't been very well, but she was in good spirits tonight. She's a good laugh. Tonight I'm just finishing off this entry and then I'm going to try and have an early night. I started reading a book the other night and I want to possibly finish it. I'm not sure how much is left. 

Anyway, hope everyone has had a good weekend. 

Thursday, 20 March 2014

Acceptance and Awareness

"Problems cannot be solved at the same level of awareness that created them."
Albert Einstein

Yesterday's blog post was a little heavy and I apologise for that. As much as I want this blog to be a positive representation of living with disability, I also want it to be truthful. I don't want it to come across like I look at things with rose tinted glasses, nor do I want to pretend I don't have struggles. Everyone has struggles, and we all deal with them differently. How I choose to deal with mine is by rationalising them and then accepting them. I accept that my life will get a little tough sometimes, just like everybody else's and that's okay. There is no point dwelling on the things you cannot change. That being said, there is a big difference in burying your head in the sand and accepting a problem before figuring out how to move forward. Yesterdays entry wasn't a self indulgent attempt at throwing myself a pity party. That was me unloading all these thoughts I had in my head and rationalising them, so I could accept what was happening and then figure out the best way forward in dealing with it. Today is another day and I feel considerably better today than I did yesterday. The worst thing is bottling up your problems. Granted spilling your guts online isn't for everyone, but I think it's important if I'm going create this blog about my life and share my story, that I am honest and show a full representation. But yes, I hope that very heavy post didn't put anyone off. 

Now, on to what the Albert Einstein quote above is about. Unless you've been living in a Wifi'less cave or for whatever reason abstain from Facebook, you've probably noticed over the last two or so days the abundance of 'no make-up selfies' floating around. My own Facebook feed was full of them on one hand, and on the other I had a bunch of people wondering what the point of it all was. Eventually someone mentioned it was to raise awareness for breast cancer. 

Initially I didn't really see the point. I thought it was another pointless bandwagon, but then a friend posted hers with a number you could text to donate £3 to Cancer Research UK. That made a little more sense to me. At that point I decided maybe I'd get involved after all, so I took my selfie and posted it on Facebook and Instagram and urged people to text 'BEAT' to 70007 to donate £3. 

Still people were complaining that it was silly and pointless, and to be fair.. a lot of people were doing the selfies and not really saying what they were for or how people could donate. However I woke up today and seen someone had posted a link to a news article about how, "The ‘no make-up selfie’ trend has helped charity Cancer Research UK raise more than £1 million through 800,000 text donations since yesterday." and I was astounded. I was even more surprised to read that the no make up selfies hadn't even been something any cancer charity had started themselves. It had started as something completely unrelated and like a game of Chinese whispers, people started associating it with breast cancer awareness. It just shows you the power of social media. 

There are still people criticising it. Saying people are just being self indulgent and will use any excuse to take a selfie, or they just want to look good saying they've donated and how it didn't really educate anyone. I think though for whatever reason a person took part or whether it taught anyone about cancer or not, you have to look at the positives. 

People might not know more about breast cancer or cancer than they did yesterday, and maybe not everyone that took a selfie also donated. But I know for a fact that if it hadn't been for the bunch of make-up'less faces clogging up my Facebook feed, I probably wouldn't have given cancer a second thought yesterday and I definitely wouldn't have donated. And it's not for a lack of caring or only doing it so I can jump on a bandwagon, but most people don't generally spend a lot of time thinking about these things until we're presented with a reminder. And that's why raising awareness by any means is important to research. 

Everything aside, I think it's a really amazing example of the power of social media. And even better because it's in relation to doing something positive and productive. 

On to what none of you have been 
waiting for. My 'no make-up selfie'

[image no longer available]

Remember whether you want to take part in the 'no make-up selfie' thing or 
not you can still donate £3 to Cancer Research UK by texting 'BEAT' to 70007

Guilt Of Independence

"Independence can give Carla something 
that you and I will never be able 
to give her, dignity." 
The Other Sister

Independence is always something I've wanted, but never something I've properly striven for. I guess I never really knew what independence even meant for someone like me. I wasn't sure it existed for a person who requires help for the most basic things, like getting out of bed, getting dressed, cooking and the bathroom etc. I always figured if there was such a thing as independence (from my parents at least) it would come in the form of a knight in shining armour, who'd come and rescue me from my.. bungalow. Not that I assumed whoever I'd end up with would be my carer and take over from where my family left off, that's the last thing I'd ever want. It's just moving out on my own like a regular fledgeling adult never seemed possible.

I'd be lying if I said I didn't struggle with this. I've had bouts since I was about sixteen where I felt very trapped and smothered. Even falling into a bit of a depression at points, and developed a weird relationship with food because I lacked control in almost all other areas of my life. I think most people on the cusp of adulthood start feeling like that to different degrees. For a lot of people they escape when they're eighteen and they go off to University, which was another thing I never fully considered as an option. Or if not, people just generally grow up and move out when they can. As much as I wanted that, and hoped for it and maybe even assumed like I said that someone would rescue me, it still felt like I was going to be stuck here forever. I felt like I was never going to have any control over my life or where it was heading.

This is partly where the guilt comes in, because I know I sound really ungrateful. I sound like all I'm doing is complaining, when really I don't have it bad at all. That's not what I'm saying though, I am grateful and I know I'm lucky, but everyone gets to the point where they need to grow up. I can't rely on my parents forever, because they're not going to be around forever. And there's a certain amount of anxiety that comes along with that, not knowing what would happen to me if tomorrow I didn't have my parents to take care of me. Not to mention the anxiety behind feeling like a burden to them in the mean time, even if they don't view it that way.

Like I said though, I was never really aware of any options other than living with them. None that seemed possible. At a time where I was particularly feeling low about the whole thing we approached my Occupational Therapist about getting some work done to our house. Initially my parents wanted to buy the house we live in from the housing association we rent it from, then hopefully build a separate little granny flat for me out the back. Sort of like my own part of the house, where I could have my own space and make my own rules. This felt like a good compromise, however my parents were priced out of buying the house and the housing association who had adapted it to make it wheelchair friendly for us moving in, couldn't afford to do the adaptations we were hoping. In the end we compromised and they were going to make my room bigger, put in an accessible bathroom and give me a low level work top in the kitchen. I accepted, thinking this was the best I was going to get whether it was going to fix any of my anxieties or problems or not. There was also a bit of pressure from my parents who thought it was great, and I kind of just went along with it. There was a lot of anxiety for me surrounding the adaptations because we had to move out while the work was being done and I was worried what that meant for my cats. It seemed wrong to put them through that when it wasn't really going to fix anything. It wasn't going to give me more independence or privacy. I'd brought this up with my family and the fact I didn't see the point in going ahead with it, but all it had done was cause arguments because my parents really wanted it. So eventually I just kept my anxiety to myself and let it build.

I had attempted to look into independent living for disabled people on a number occasions, but it was one of the few times the internet didn't really give me much to go on. Then I met a girl on Instagram with the same disability as me, who'd been living independently with the aid of paid carers for a couple or so years. All of a sudden everything seemed a little more possible, even if she lived in America. I knew the system here in the UK was probably different, but at least I knew it was physically possible for someone like me to live by themselves. This was very encouraging, but also made me more anxious about the work to the house. I was worried if I had this complete overhaul to my house that it would go against me if I did want to move out. They had asked me when they agreed to do the work if I definitely planned to stay in this house and I had said yes, not knowing there was really any other option. That really hadn't sat well with me. I felt like I'd sold my soul or something. My parents said they couldn't make me stay here, and it wouldn't make it harder if I ever did choose to move out. At this time I had no idea my parents never actually thought I'd ever move out (my mums own words).

I thought a good start might be to look into getting a care package. Even if I was going to have to stay with my parents, I thought it might be a good idea to get used to someone else looking after me. There's a huge difference between having family look after you, and having paid carers looking after you. Family don't have a rule book or set times to do stuff, paid carers do. My parents aren't getting any younger, my mum has back trouble and my dad has heart trouble. It weighs a lot on me that I could be causing more damage to them. Or that one day they won't be able to do that stuff and I'll be forced to get used to outside carers. So I decided to take the bull by the horns. I contacted a local friend and asked if she had any experience with outside carers. She said she had and that she had been living in halls at University, away from home for the last three years. I told her of my plans, and she really encouraged me to look into moving out. I guess my talk with her watered the seed that had already been planted.

In the end I got up the courage and I told my parents about my talk with my friend, how I wanted to look into moving out and that I wanted to talk to my OT about the work getting done to my house because I wasn't sure I wanted it anymore. Especially if it was going to have a negative impact on my future. My parents agreed to let me talk to my OT. They were a little inconsistent with their support, but the important thing was that they were going to let me do it. And what's more, they let me talk to her on my own.

Yesterday was the day I had the meeting with my OT. I think it went really well. I was kind of shocked. I hadn't actually met her before so I was very nervous, but she said I spoke really well. People never seem to notice my social anxiety. Anyway, I was kind of surprised how fast things are moving. I thought we were just meeting for a chat. I told her my concerns about the work and how I wanted to look into moving out. She confirmed what I had thought, that it would go against me considerably if I were to get the work done to our current house and then decide to move out. Later my mum said she still didn't think that was true, but I think it's safer to follow what the professionals say and plus not having the work done is kind of a load of my mind. I told her my interest in moving out and getting paid carers etc and she was very encouraging and supportive. She said the first thing we'd have to do was call off the work which was basically just about to start. So I guess I really called her just in time. I explained to her that this had been on my mind for quite a while, but the delay in bringing up my concerns was partially to do with getting my parents agreement. My parents had actually thought it would look worse if I pulled out of getting the work done, rather than if I went through with it then wanted to move. She told me once she let them know I wasn't getting the work done, I would have to call the housing people and ask to be rehoused. Then she would also refer me to a social worker and they would help sort out my care needs. She also planted some seeds to think about, and suggested I think of what skills I need to live by myself and start to acquire them. Things like calling people, laundry and going out by myself and such. I also brought up the possibility of my sister moving in with me, and she said that might be possible. I, by no means want my sister to be my carer and I made that clear, just I thought it might be safer to have someone there at night and my sister and I always wanted to live together for a while anyway. By the end of our discussion I felt a little more clear on everything, I felt like a weight had been lifted off since she was calling off the work. And I also felt better because I knew my anxiety about it had been justified. I felt like I had finally started moving on the road to independence, or even just a journey to figure out what the future meant for me. I know I'm right at the beginning and living independently might never happen, but if I don't try I'll never know. And they do say you regret the things that you don't do.

And that's what I'm trying to hold on to. That I need to do this for me, and I'm entitled to grow up at some point. It's just there are so many strings attached, and my decisions have a domino effect on those around me. Our house, my mum losing the money she gets for caring for me and my dad losing my car (which I paid for) because legally it has to stay with me. And that is part of the reason I'm doing this, because I truly also feel it will benefit both me and my parents to cut those ties we have looming over us. I know it will be difficult in the short term, but in the long term it will make everything less complicated. My affairs will be mine, and my parents affairs will be theirs. There will be none of this confusion.

My OT phoned me today to give me an update. She said she had spoken to the man who is to do with getting the work done and told him the change in situation. She also asked him who I needed to contact in relation to rehousing and he said he'd get back to her. I could tell my mum was taken aback that she didn't ask to speak to her. And I understand why it's difficult for her, when she's so used to dealing with these people and being in control, that I'm taking this control back. My dad has barely spoken to me since yesterday (I might be being paranoid, he might just be tired from working), and he apparently keeps bringing up our old house we sold to be able to move here. He thinks the move was pointless, despite the fact we've lived here eight years. The house has been pretty tense and everything feels a little awkward, I'm pretty sure my mum has been crying a bit too. Although she came into my room tonight and had a chat and she seems on board again. I think on some level my parents are taking it a little personal too, like their care hasn't been good enough and that's why I want to leave. So there's all these mixtures of emotions and thoughts and that's where a lot of my guilt stems from. The fact that me wanting my independence has completely turned their worlds upside down. And even though my rational side really feels like this is for the best, not just because I want my own place, but because it's the responsible thing to do. To take control of my future and not just depend on my parents because it's the easy thing to do. Put things in place now because my parents aren't always going to be around, and also to enjoy a taste of freedom because lets be real, my disability is only going to get worse and I want to have lived a little of my own life before that happens. Still, because I'm the one putting them through this I'm still plagued with guilt and the thought that maybe I'm just being really selfish. But when those negative doubts creep in, I just remember this quote...

Twenty years from now you will be more disappointed by the things you didn’t do than by the ones you did. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.
Mark Twain

Monday, 17 March 2014

Sochi 2014 Winter Paralympics

So after nine action packed days the Sochi 2014 Winter Paralympic Games finally came to an end, and was rounded off in style with the epic closing ceremony. It was a truly brilliant nine days and as Sir Philip Craven said it was,"a spectacular showcase of sport and the power of human spirit." 

Sochi's games were started off by the Winter Olympics Games, but I didn't watch much of it. Winter sports just aren't my thing, apart from Ice Hockey and I guess I just didn't make time to watch it. I wasn't sure if I was going to watch the Winter Paralympics Games either. I'm not the type of person that will watch something purely because it involves disability, at least in most cases. There has to be other reasons I'm interested too. Especially in relation to the Paralympics, for me watching it just because the athletes are disabled is a discredit to the athletes themselves and the sport. They may be disabled, but first and foremost they are amazing athletes. Of course most of them have been through a lot and they're all very inspirational, but I think anyone that dedicated and talented is inspirational. Personally for me when I first started watching the Paralympics back when it was in London, the different disabilities were at the forefront of my mind. Wondering what each athlete's disability or impairment was and completely missing the fact it wasn't important, but by the end that was very much the last thing I was thinking about. All that mattered was the athletes themselves and the sport, and that's how it should be.

The Winter Paralympics Games started off with the opening ceremony. Admittedly I didn't catch all of it, as again I wasn't planning to watch it. My dad put it on and it caught my eye. It was pretty amazing. I liked it a lot more than the opening ceremony of the Summer Paralympics in London. I really enjoyed Sir Philip Craven's speech, and was shocked when he mentioned how the Soviet Union had declined to host the 1980 Summer Paralympics in Moscow claiming that, "there are no invalids in the USSR." I'm not so sure if I was shocked that it happened, or the fact he was bold enough to bring it up. I guess we should be thankful that Russia has progressed in some way in the last 30 or so years. They put a lot into Russia's Paralympic team and reaped 80 medals in total in this winter games. There was a lot of talk about the lasting legacy for disabled people in Russia and of building a barrier free Russia, barrier free in both a physical sense and in relation to the attitudes of the people. As much as I think that would be amazing, I don't think we should get ahead of ourselves. As many people have pointed out, Sochi was a Paralympic bubble. Hopefully there will be a lasting legacy in Sochi and all being well that will touch on other parts of Russia, but it is a huge country and this kind of change takes generations. We only have to look at the UK or the USA and despite us supposedly being so much more advanced when it comes to inclusion and such, I doubt you'd find any disabled person that couldn't name a bunch of barriers they face every day. Both in the physical sense and the attitudes of people around them, whether those attitudes are discriminatory or patronising. I witnessed this just the other night when I had to sit and listen to my sister's friend mocking the athletes and saying how it wasn't real sport. I was so shocked that someone was saying this in front of me, a disabled person, that I couldn't even fathom anything to say in return. So whilst I hope there is a continued journey in Russia to change attitudes and better the lives of people with disabilities, we must realise that it won't happen over night. 

So on to the sport. The thing that got me hooked on the games was catching an Ice Sledge Hockey match. I used to be very into Ice Hockey, but I haven't watched it in a few years. I really do love the game though. If you're an Ice Hockey fan, it's hard not to be a fan of Sledge Hockey. It's basically exactly the same, apart from the fact they're sitting on a sledge. It's still the fast paced, contact sport that makes Ice Hockey fun to watch. Sledge Hockey is maybe even a little more brutal because they're attached to a metal sled, though there's an extra type of infraction called teeing which is charging someone using your sled. So you can't use them as a weapon too much. 

My two favourite teams were USA and Sweden, since the British team didn't qualify for Sochi. I guess Sweden was my underdog team, they ended up coming last. They only had eleven players, including their two goalies. Other than them being underdogs, one of their players also caught my eye. His name was Per Kasperi. He really stood out on their team, really dominating the ice when he was on it. Also he favourited one of my tweets, which is also nice and I totally fangirled. And I couldn't have meant it more, I really hope to see Sweden make it back for Pyeongchang 2018 and I hope with many more  young players just like Per Kasperi. 
I'm not quite sure what made me support USA, I was just feelin' it. I guess maybe it was seeing some of their players getting interviewed and I liked their playing style. Canada were playing really well at the start of the games and seemed like likely winners. This seemed even more likely when Russia beat USA to the top of their group and there was a USA vs Canada semi final rather than the final people had been hoping for. Canada for whatever reason seemed to fade throughout the competition though and in the end there was a USA vs Russia final. USA taking gold, Russia taking silver and Canada taking Bronze. 
USA celebrating winning gold. 

Singing the USA national anthem 
after receiving their gold medals.

Even though I got the outcome I wanted, it was a bittersweet ending. As much as I was glad I didn't have to get up early for any more matches (I'm not a morning person) I was sad I didn't have any more Sledge Hockey to watch. I followed some of the guys on Twitter and the British Sledge Hockey Team etc, so I'm hoping to stay in the loop and follow them. Still, I can't wait for Pyeongchang and I'm hoping with the popularity of the sport this time round and the great coverage it got on Channel 4 that British Sledge Hockey will get more funding and recognition and maybe by 2018 we'll be able to qualify. I really hope so.

Now, on to the sports we did have people taking part in. Well, this was a banner year for the Paralympic GB team, especially seeing as we'd been empty handed at the end of 6 of the 10 Winter Paralympic games. We won our first gold medal ever in Winter Paralympic games, and this was particularly special to me because it was a girl from my very own town of Bangor N. Ireland who won it, Kelly Gallagher. She won it skiing with her guide Charlotte Evans in the visually impaired women's Super-G. I was so proud, she's definitely the best thing to come out of Bangor since Gary Lightbody of Snow Patrol. 

Jade Etherington won us a total of four medals skiing with her guide Caroline Powell, which is amazing. She won silver in the visually impaired women's Slalom, women's Downhill, and women's Combined and bronze in the women's Super-GAnd the GB's wheelchair curling team also took home a bronze medal. I think our target for the games was 2 to 6 medals, so we reached the top end of our target. Hopefully with all the buzz surrounding Paralympic sport now, there is only up from here and come 2018 we'll do even better. There was some young talent this year with Millie Knight (15), James Whitley (16) and Ben Sneesby (19). Although they didn't medal, it will be interesting and exciting to see how much they will have progressed by 2018, if all being well they compete again. 

And finally it all came to an end with the closing ceremony. Again, it was amazing. This time I watched from the beginning and as much as it was a celebration of a wonderful games, it was also sad to be saying goodbye. I remember feeling much the same when the summer games ended. Even without actually being there I definitely get a sense of being in a little Paralympic games bubble. I can't imagine how it must feel when it comes to and end for the athletes. I took some screen shots of my favourite parts of the closing ceremony.

Human Tetris
 Need I say more?

When Aleksey Chuvashev, a Summer
Paralympian climbed 15
metres to position the apostrophe that
changed Impossible to I'm Possible.

Putin during Sir Philip Craven's speech
looking considerably more happy than he
did at the opening ceremony, all tucked 
up under a blanket. The Crimea/Ukraine 
referendum taking place that day must not
have been weighing too much on his mind. 

And last but not least the big dance number 
at the very end, when the big boat came out
with all the dancers and the DJ played.

Roll on Pyeongchang 2018. 

Saturday, 15 March 2014

Leopards and Penguins and Polar Bears! Oh my!

Originally I had planned to write about the Winter Paralympics today, but I've decided to leave that until tomorrow after the closing ceremony. Still, some post a received today gave me something to write about anyway. A few days ago I was watching some Conan and Jay Leno clips where they had animal experts on with an assortment of animals. A few of these animals were endangered and they were trying to urge people to get involved in trying to save then. It was kind of a spur of the moment thing, but I soon found myself on wwf.org.uk looking through all the different animals you can sponsor. Recently I cancelled the Photoshop subscription I was paying £17 for every month, and figured I could probably put the money I was saving to good use. I mean I wasn't exactly missing it when it was being wasted on a program I barely used, so I'm not going to miss it when it's actually doing some good.

I ended up signing up for a WWF membership and decided to donate £5 a month, and on top of that sponsor one of the animals. Then came the difficult part, picking from all the animals which to adopt. It felt like Sophie's Choice. They had all these pictures of these beautiful endangered animals and it was so difficult picking just one. So in the end I opted for their Snow Pack. It was the only pack with multiple animals they had, but they are all animals I love. It includes the Snow Leopard, Adélie Penguins (the only reason I like the movie Happy Feet) and Polar Bears. To them I'm donating £10 a month.

I signed up a couple of days ago and this morning my membership and adoption pack arrived. I didn't really expect it to be here so soon, so it was a nice surprise. I've not given it all a proper read yet as I've spent most of today tinkering with my blog and watching Sledge Hockey, but I've taken some photos of what I received in each pack. So here we go...

When they first arrived: 
The membership pack is in the envelope and the sponsor pack is in the box because there is a little more to it. 

The Membership Pack:

So as you can see in the Membership Pack you get the two little information booklets (What we do and Active ideas for the family) and two postcards, an adorable panda pin badge, a little thank you letter with a small wallet card attached and a sleeve to keep them in. 

The Snow Pack Adoption Pack:

Like I said, there's a little more to the Adoption Pack. With it you get five booklets (My snow animals, All about snow leopards, All about penguins, All about polar bears and What we do), a set of stickers featuring your chosen animal(s), what I think are bookmarks and a canvas bag, plus the sleeve to keep them in. There is an option to get a soft toy of your chosen animal(s) but I opted out of that, even if my childish side was tempted! It just saves the charity money. 

I think you get updates and maybe a magazine three times a year, as far as I remember. So that's something to look forward to. But yeah, like I said.. I didn't really give it all a proper look through when I took the photos because I was 'busy' most of today, but I will tomorrow. 

If anyone else is interested in getting involved here is the link again: http://www.wwf.org.uk/ It's a really great cause, and every little helps.

(Disclaimer: I know there has been some criticism surrounding the organisation, but I still feel on the whole they do a great job and are worthy of the little bit of money I'm donating each month.)

Friday, 14 March 2014

Introduction to Bloo

Hello and welcome to my first blog post. I know I have some information about myself in the little side bar, but I thought I would start of my blog with another little bit about me. An introduction to myself and what themes or topics you might expect to find covered in future posts. So here goes nothing... 

Well as you've probably guessed by now my name is Sara and as you may also know, most people call me Bloo. Now, the reason for this is that my parents nicknamed me Sara Blue as a baby because of my blue eyes and it kind of stuck. As I got older I started using it as a screen name online and such, but after Googling myself (as you do) I found out there was a porn star called Sarah Blue. So I decided to change the spelling a little, and eventually people dropped the Sara and just called me Bloo. And that's the story of my nickname. 

At the time of posting this I am twenty three, but I will be twenty four next month. My birthday is the 20th of April, and fun fact: it's the same date as Hitler's birthday and the Columbine shooting. They do say bad things happen in threes, just saying. 

I live in Northern Ireland, currently still with my family. My mum, dad and younger sister. I also have an older sister who lives in London. I don't have many friends locally, or at least ones I hang out with. That is something I'd like to rectify with my whole 'do more stuff' New Years resolution. In the past I've always let friendships get away from me for a number of reasons which weren't always my fault, but I don't want that to happen anymore. 

At the moment my social life in the real world is centered around my younger sister Eva and my best friend Gary. I do everything with Eva. She is my sister, best friend, drinking buddy and carer combined. I literally don't know what I would do without her. As a disabled person who requires quite a bit of assistance, when doing anything you need to be with someone you're completely comfortable with and you don't get much better than your sister. I'm sure she'll feature a lot on this blog.

Gary kind of came out of nowhere. I've known him for a bit over a year now and we met on a dating website. It wasn't like that. We've always been just friends, but we've quickly become super close best friends. It's like we've known each other for years. We don't get to see each other nearly often enough, but again hopefully that will change this year. Still, I don't think we've gone a day without texting since we've met and I can't imagine it not being that way. I'm hoping when he finally gets the super awesome girlfriend he deserves, the fact I'm disabled will mean she won't see me as a threat and won't have a problem with our friendship. Sounds like legit logic right?

Eva is about five years younger than me, and my older sister is about five years older. Her name is Jann. Like I said she lives in London, so we don't get to see her much, but all three of us are still pretty close. Thank God for this age of technology. She lives with her boyfriend and works in a hospital. She recently got into King's College to study nursing in September, so we're all super proud of her. Growing up I never thought she'd become a nurse, but it will be super handy having one in the family. And she's so good at it. Anyway, Eva and I are hopefully visiting London in Summer 2014, so we'll be seeing her then. I'm super excited. 

Then there's my parents, Cathy and Trevor. They're your average parents. My dad is an electrician by trade and my mum works in Tesco. I love them a lot and they have done a lot for me. They're struggling with the fact I'm wanting to become independent and I'm attempting to grow up, but they're trying to be supportive.. most of the time. Despite anything I may rant about or moan about, I will always be eternally grateful to them. Never doubt that. 

Another thing you probably already know from my blog description is that I'm disabled. I have Congenital Muscular Dystrophy, which is a muscle wasting disease. I was initially diagnosed at three and a half, but I am technically undiagnosed because CMD is an umbrella term that has now been divided into different types. Research has come a long way since I was diagnosed. A lot of the things I've been through such as Scoliosis or Sleep Apnea, that we weren't warned about are common knowledge and can be found on CMD fact sheets now. Things have progressed a lot in twenty years and although there's still no cure, it's still encouraging. Even so, there is a lot of diversity within the CMD bracket alone, it sometimes even surprises me how different we all are. It's really quite interesting, and I really hope my blog might lead me to meet some more people like myself. 

I would like to put a disclaimer at this point and say although my blog will include a lot of things about my life as a disabled person, my thoughts, feelings and opinions in relation to disability, it will not be all doom and gloom. If anything I want to show that living with a disability isn't as depressing as most people seem to imagine it to be. I don't view my disability as a big problem to be overcome, or something to be sad about. It is what it is. Obviously there's frustrations, but everyone has frustrations. You have two choices in life, dwell on the things you can't change and let them break you or accept them and deal with them the best you can and sometimes they can make you. As much as I would say my disability doesn't define me, it definitely has played a big part in who I am today. And I think I'm pretty great. So it can't be all bad, right?

I know I'm rambling on a little, so I'll try and wrap it up. Other big parts of my life that will probably feature in this blog are my extended family, pets, my art, my crafts, music, my thoughts and opinions on current events and such. My family and my pets mean the world to me. Since I can't have children my pets are my babies. I have two cats called Findlay Wilder Reid (who we call Findlay) and Ethel (who we call Effy), I have a dog called Baby and we have a family dog called Gracie who is 15! and my sister has a snail called Gary

That pretty much sums me up I think. Don't worry, I don't imagine all my posts will be this long. Though I am known for being a bit of a rambler, so I'll apologise in advance anyway.

So yes, I'm Bloo and welcome to my blog.  ♥

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