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Sunday, 22 January 2017

Sunday Stories | Fiona's Endometriosis Story

Sunday stories is a series on my blog where every week a different person talks about their condition (physical, mental etc.), shares their story and raise awareness. For the past 5 years I've used my blog as a space where I could do just that but I wanted to extend things even further to allow others to talk and raise awareness of their conditions. I'm really excited to introduce everyone to you! Today the lovely Fiona is sharing her story and journey with Endometriosis, I'll hand things over to her!


Can you tell us a bit about your condition and how you were diagnosed?

I used to suffer from a condition called endometriosis, this is a condition where the womb lining grows in places other than where it should. This meant that every time I had a period I would bleed in numerous places as well as being in considerable pain. I was diagnosed by having a series of scans to my kidneys as well as a laparoscopy. This is where they insert a camera via your belly button in order to see what is happening to your reproductive organs and establish the extent to which the tissue is growing in other areas. 

How does your condition affect you on a daily basis?

In the past, the pain was so severe that on some days I could barely get out of bed, never mind actually make it into work. At one point I was a hotel receptionist and was expected to stand at work which caused severe pain and meant by the time I got home all I wanted to do was curl up and pray the pain away. I was popping painkillers like smarties and the worst part was they weren't taking the pain away. I couldn't leave the house without making sure that I had my pouch of sanitary towels and heat pads just in case I started bleeding as I had no way of knowing when this was going to occur or for how long either. 


Do you have any tips for someone who is newly diagnosed?


Heat pads are your best friend and particularly the ones that wrap around your body as they provide some support to your lower back too. Invest in a good hot water bottle as heat will help relieve the pain. Now the unknown bleeding and any other issues have a name ask lots of questions and do your research but remember that every story is different. If your painkillers aren't doing what they need to, then go back to your doctor and request stronger ones but only take the recommended doses. If you are determined on a particular treatment option, stand your ground. If it's what you want then the doctor's will agree with your decision but be warned they will try other options first. 

What is one thing you would like people to remember about your condition? 

That just because it doesn't look it, it doesn't mean that I'm not in pain. Also, just because I decided a hysterectomy was what would work for me doesn't mean it will for everyone. I also wish people would remember that although I no longer have a womb I can still have endometriosis as the HRT tablets I take are actually feeding it and while it has subsided (for now) it's not necessarily gone forever. 

You can follow Fiona on Facebook, Twitter, Instagram and read her blog here. You can find more information and support on the Endometriosis UK website.

If you want to take part in this series and share your story then send me an email: shonacobb21@gmail.com
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Thursday, 19 January 2017

The Wheelchair Space | Who Gets Priority?

In 2012 an incident happened that wheelchair and powerchair users will be very familiar with. Doug Paulley, a wheelchair user, was denied access to the wheelchair space on a FirstGroup bus when a mother with a pushchair refused to move. There was a sign on the bus that said 'Please give up this space if needed for a wheelchair user', these signs are a common sight on most buses. Mr Paulley was left at the stop as the bus drove off with the mother and pushchair still in the wheelchair space, leading him to argue that FirstGroup's policy of 'requesting, not requiring' people to move from the space was discriminatory. So, he decided to sue FirstGroup as he thought that the Equality Act 2010 had been ignored and that 'reasonable adjustments' had not been made for him, as they are required to be made by law.

He originally won his case in 2013 but the ruling was turned over by the court of appeal the following year, leading Mr Paulley to take things to The Supreme Court. At 9:45am on January 18th Mr Paulley finally heard the verdict of the judges. The court unanimously allowed his appeal, meaning he won, but this was only a partial victory in mine and others eyes. The ruling means that FirstGroup still cannot remove people from the bus who refuse to vacate the wheelchair space but they do need to go further than just requesting that people move, where reasonable they should take steps such as rephrasing the request as a requirement or even refusing to drive on until the space is vacated.


So, that is why I call it a partial victory. Whilst the case has brought awareness to this issue and bus drivers will be required to do more, the simple fact is that if someone doesn't want to move their luggage, fold down their buggy etc then they cannot be forced to. Wheelchair users will still often be left on the pavement waiting for the next bus or even the bus after that. I don't think the ruling has provided enough clarity and there will always be situations where asking someone to move is unreasonable but how do you decide that? A lot of responsibility is still on drivers to make an individual and perhaps biased decision about who should move and who should stay. I've had a lot of comments on my posts from people saying 'what if the child in a buggy is disabled?' or 'what if the parent is disabled' and I feel in those situations we all just need to use our common sense, I would never force a disabled child or parent off a bus. People seem to think that us wheelchair users are monsters and we will force anyone and everyone in the wheelchair space off the bus, it just doesn't work like that. This is all about people making as much effort as they can to accommodate wheelchair users on the bus. Personally if there is space I do not mind sharing the space with a folded buggy or even an unfolded small one, I have a small powerchair, but it's about when it's reasonable to do that.

MY EXPERIENCES

One time I was lucky enough to get on the bus into a clear wheelchair space, such an experience really puts a smile on my face. What doesn't put a smile on my face though is a driver who doesn't know when to say no. During my journey a total of 3 buggies with 3 people and an additional child were allowed on to the bus and they left me pinned into the wheelchair space, anxious about how I would get out. There was barely enough space for anyone to breathe on the bus, let alone move. When it came to me getting off the bus all 3 of the parents could see that I was struggling to manoeuvre my way out of the space, they did not move an inch though. I continued to try my best to get out but it was no good so I asked them to move and they moved just enough so that I could get out. Then as soon as I was out the space there was a scramble between them to get to the space first, it was quite pathetic to be honest. The point is the driver should not have let that many buggies on especially without asking me if I had enough room and the parents should have moved when they saw I was struggling. So you see, even if I get into the wheelchair space first there are still potential problems that could occur. Including parents giving me dirty looks through the bus window when they see I'm in the wheelchair space, I've even had eye rolls and tuts from fellow passengers for using a space created for people like me.

Then of course we have the scenario where I cannot even get on the bus because of buggies. People who refuse to fold down buggies that can definitely be folded, parents who simply ignore my kind request for them to move or fold the buggy and then drivers who just drive past me or don't bother asking parents to move. We need to do better. It's gotten to the point now where I often have panic attacks before I've even left the house, panic attacks that stem from my anxiety about using the bus. I've started leaving early for hospital appointments in case I can't get the first or even the second bus, I've even started using taxis that aren't suitable for my powerchair but at least I'll get where I need to go on time. My biggest anxiety trigger these days is public transport in general. Will I get on the bus? Will someone meet me at the train platform with a ramp? Is the wheelchair accessible taxi really going to be accessible? There are so many things that I have to think about before I even leave the house, so many scenarios that I must prepare for. (read more of my experiences with accessiblity in a blog post here.)

I'm tired as well. I'm tired of having to fight my corner, I'm tired of trying to educate ignorant people. It gets exhausting saying the same things over and over again with no positive change. I don't want this to turn into a wheelchair vs. buggies argument either, this whole thing is just about wheelchair users right to use the bus and public transport like everyone else does, with ease. I really do hope that this Supreme Court case will make a difference for myself and other wheelchair/powerchair users, I wish I could stay positive about it but past experiences and knowledge of how unkind people can be makes it very difficult.
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Wednesday, 18 January 2017

New Year, New Snacks | Live A Little Lighter w/ Graze

2017 has well and truly begun, those of us who want to have made our resolutions/goals and fingers crossed we'll all complete them! I don't usually make food based goals or resolutions but as you know I'm a Graze Ambassador and just an overall fan of their snacks so I made a resolution with their help. I want to Live A Little Lighter, I want to choose better snacks and try and swap out some ingredients in my meals for healthier options. This is just a small change that I'm making and I'm definitely not ready to give up my Dairy Milk chocolate yet but it's a small step in the right direction. 


Graze makes achieving this goal so much easier because they have loads of snacks on their website that are all under 100 calories and they aren't just boring mixtures of seeds either! One of their under 100 cal snacks that I really love is Garden of England which contains mini strawberries, blackcurrants and apple slices. I really love fruit so this snack is perfect for me and the strawberries are so sweet that it satisfies any cravings for chocolate and sweet treats! 

I love that Graze are really making an effort to create healthy snacks that are still really tasty! The content on their website and blog really inspire me to make better choices too and I'm always drooling over the food that they make.


I feel like this post has kind of just been me saying 'Graze are awesome' but it's true, they really are awesome. I can make smart snacking choices and have them sent straight to my home with no fuss! If you haven't tried Graze yet then you can get your 1st, 5th and 10th box free using the code 'SHONAC1HP' and if they aren't for you then you can just cancel the subscription after the first box!

Have you made any food related resolutions this year?

I'm a Graze Box Ambassador which means that every now and then the lovely team send me some snacks to try out, however I am always 100% honest and graze is a brand that I've loved for years!
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