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Wellness, illness and everything inbetween

When people look at me, I like to think they often see someone who throws themselves into everything. But I also like to think I hide the impact of being the girl who throws herself into everything – The struggles I face, and the difficulty of keeping myself afloat while facing a very real, very fluctuating chronic illness. Sometimes though, the mask needs to break and the reality needs to come through.

In all honesty, I think sometimes that being someone who is unwell and living a fairly normal life can be even harder than being a) completely well or b) completely ill. I mean, each of these come with their own issues: paying bills, having a social life and all life’s problems are shared across the board. But being at that half way house, there is no common ground. It’s hard to accept help. People who are ill believe you are living the life of riley – I mean, you can get out of the house and live your life (for which I am very grateful), surely everything is fine and dandy? But being invisibly ill and doing everything a normal person does whilst being ill means there’s often a lack of understanding from all sides.

I don’t blame people for this lack of understanding – how can they know? But it does make it a very lonely affair. Doctors who have nothing more they can do to help, lecturers who are just doing their jobs, companies who just need staff, friends who say: “But you’re not ill?” yet don’t see the side of you that is too exhausted to feed yourself, to think, or the side that has to sit in the library for a few hours just to get enough energy to jump on the bus for the ten minute ride home. It’s no-one’s fault – in fact maybe it is mine. I have painted myself as someone who is invincible, with an endless supply of energy, so yes some blame lies with me (who doesn’t paint their life as perfect on social media), but it doesn’t change the fact that for me it is a hard, and often lonely, struggle. The pretence of ‘I’m fine’ is sometimes more exhausting than the pre-existing exhaustion.

I try to be overwhelmingly positive, and I’m so lucky to be surrounded by my family and friends… but when I feel so ill my usually sharp brain goes into meltdown over trying to break through the mist in my mind to simply decide what I want from the supermarket, or when my body is moving without my permission or when I have deadlines that I can’t complete due to utter exhaustion, I have to take a moment and step back. I stop comparing myself to others and look at how far I’ve come. It is lonely, and yes it’s weird and frustrating – but isn’t that just life?

I think the point of this blog wasn’t just to have a moan (though I did need one), but to ask people to show some compassion. Whatever position you’re in, there is no black and white. People are always going through stuff. Different stuff depending on the person. But it’s our job to look through the mask and ask ‘how are you?’ And more importantly, we need to listen to the answer.

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BACK IN LEEDS

After the two busiest weeks I have ever had, I finally feel inspired to write a blog post. Though I’m not convinced I’ll finish it in one sitting… I’m nodding off already.

As you can probably imagine (by the fact I’m in my jammies, tucked up, at 9pm) second year is actually feeling really positive right now.

On the Sunday I moved in Eva, Laura and I had a girly night in.  It was very ‘PR Darling’ and involved copious amounts of prosecco, as well as some cheeky hummus and pitta snacks. We watched Gavin and Stacey followed by a couple of episodes of Peep Show and then I headed back to my flat. This second year malarkey is wild.  The night after we headed out-out which was lots of fun and slightly more student-like than staying in!

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PR gurls

I feel 100% more comfortable in my new flat. I love it, and my room is my new favourite place to be, despite the initial problems when we moved in, (think: the usual hurdles that are to be expected with student properties!)   Though tonight it is really windy and the creakiness of the house is really becoming apparent!

I’ve been really busy too with RAG and attending numerous Freshers Fairs on behalf of the society.  After attending RAG conference back in August, me, Jenny and the rest of the committee are all pretty excited for what is ahead this year with Leeds Beckett RAG.  Did we mention a trip to Amsterdam? (Yes. Repeatedly.)

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go teaaaaam.

In between all of this, I have actually started back at uni!  The thought of second year is pretty scary but equally as exciting, and we had our first placement lecture earlier today. It’s crazy to think that (fingers crossed) this time next year I will be working full time in a real life, grown up job. I feel ready. I’m so excited for the year ahead and everything that it will bring – I know it’ll probably be a stressy one but hopefully my hard work will pay off.

Tomorrow I start at my new Brownie pack in Leeds, and today went to the parade in Leeds welcoming back the olympic and paralympic champs back to Yorkshire which was fun…

So all in all: I’m pretty busy, 100% exhausted and enjoying every second of it.

 

 

Here’s to second year!

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Got into Uni?

So, you’ve got those all important grades, you’ve bought your first pan (what an occasion) and you’re stocked up with enough alcohol to last you until next Christmas…

What next?

Probably one of the easiest, and arguably the most important, things you can do before uni is go and get your Meningitis ACWY vaccine.

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Meningitis doesn’t discriminate. People, and particularly students,  often think they’re invincible – me included sometimes, but I can’t stress to you the importance of getting your vaccine. Meningitis and septicaemia are really not pretty things to experience and five minutes at your surgery can protect you from a lifetime of pain, hospital appointments and upset.

For those that don’t know, there are various outcomes that can occur should someone have meningitis. The best is that you recover with little to no after effects. The second is that you keep your life but are impacted forever – amputation, acquired brain injury, epilepsy, deafness.

The final is that you lose your life.

This can happen in less than four hours.

I’m not trying to scaremonger through this blog but sadly for some, these options are the devastating reality of their lives.

The four strains of meningitis that are covered by the vaccine have been on the rise since 2009, increasing year on year and sadly, teenagers are more likely to carry the bacteria that causes meningitis in the back of their throats.  Students living in close proximity with each other means it’s more likely to spread.

The goal of this post is really to educate people about meningitis so that they can get their vaccine.

Ring your doctors surgery, book an appointment and head over. It will take so little time but potentially have such a big impact.

Don’t gamble with your life, get your vaccine and make yourself aware of meningitis’ symptoms.

 

 

 

 

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SUMMER!

I thought I would just do a little post over summer, mainly word-vomit as opposed to having a real structured blog (do I ever have a structure? no.)

So, after having the world’s longest summer holidays (uni life!) and having a little bit of a worry about whether I’d be able to fill it, I really have.  I’m busier than I was when I was at uni!

For three weeks, I spent my time working as Assistant Team Leader on NCS with a group of amazing sixteen year olds. I’m really passionate about trying to override the stereotype of young people being yobs or any of that palaver, and my group really proved that young people do have something to give to society.  By the end of the three weeks, they had created a fantastic video that has had almost 8,000 views in the month since it was created. The video aimed to destroy stereotypes and illustrate diversity in their local community. I was like a proud parent or something!

While on residential with NCS, I got an email saying that I’d been awarded the Dean’s Prize for Most Outstanding Public Relations student in my year. Pretty over the moon with that!

The day after I finished NCS, I went out for a meal to celebrate three of the Brownie leaders at my pack, leaving. Not celebrating the fact they were leaving, obviously, but the number of years they had spent committed to guiding! They’ve all been a great support to me over the years so I’m hoping that they enjoy their ‘retirement’ and having their Monday nights back.

Then my family and I headed straight off to Corfu, where we returned to a lovely hotel we’ve been to a couple of times. The people are super friendly and it was good to just kick back and chill for a week.

 

After one day back at home, (one night in my own bed!) I decided it’d be a good idea to go and visit my friend Sophia over in Saltburn. It was. There I went surfing, made scones and became the dog whisperer all in one weekend. I felt like a new woman. Anyone who knows me well enough will know I am incredibly bad at baking, can’t walk in a straight line even when I’m on solid ground, never mind balancing on a foam board and also talk to dogs like they’re dapper old gentlemen and will respond to me. The dog did wee on my foot but from then on our relationship got better and better. Apparently you’re not a member of the family until he’s peed on you.

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Me being the dog whisperer.

 

When I got back from Sophia’s I started my placement, doing PR for a creative/digital agency in Manchester which was really interesting and I’ll be going in for the next few weeks for a couple of days a week.

Overall, it’s been a crazy month or two and I feel like I haven’t had chance to stop, but in a good way! In between all this, I’ve somehow made time to move my stuff into my new flat in Leeds so I’m looking forward to going back to uni, Heart Research UK and starting at my new Brownie pack!

That’s it for now, but I’m sure I’ll be back with some more musings soon enough!

Thanks for reading.

x

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FIRST YEAR: ✓

It’s official! I obviously knew I had finished first year, which to me was an achievement in itself, but now I know that I’ve definitely passed I can breathe a sigh of relief. My grade amounts to either a 2:1 or a first, (depending on the marks being confirmed) and I’m happy with either – I cannot explain how glad I am that my hard work has paid off!

To be honest, this time last year seems a lifetime away.  Since leaving college, I have grown a lot, which is to be expected, but I now feel like my career is in sight, I have a good set of friends and life is working itself out. I am a more confident person than the one I was at college, which most likely comes from having taking part in a work placement, and I have a whole new set of challenges to overcome.

I won’t lie, the first semester was a real struggle for me but the by the second I had settled a little more and had worked out where abouts I was up to. I really did have no idea what to expect with uni, so I thought I’d put down a few tips for freshers.

Attendance

To be honest, I’m probably a bit of a geek when it comes to going to lectures but in my eyes, if you’re going to go to uni, you might as well go to uni.  At an open day before I started university, a lecturer said to me that “university is like opening the door to a feast, but it all depends on you how much you take from it.” Looking back, this is good advice.  Yes, you can probably wing it in first year, but what’s the point when you’ll get yourself behind for second and third year?

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If you get a good flat – good for you! Enjoy it and be grateful. If not, don’t worry. Keep your head down, it’ll fly by (even though it doesn’t seem it at times) and you will be able to choose who you live with in second year. Try to keep it amicable, there’s nothing worse than living in a hostile environment.

Work outside of uni

This is one area I do feel like I have struggled with this year.  It hasn’t impacted my grades too much because I am quite good at forcing myself to work and living right by the library also helped, but losing the structure and guidance of college has been hard.  I think it is important though, that however much your lecturers insist that they won’t ‘spoon feed’ you, that you ask for help when you need it. Don’t drown under work if it’s making you feel terrible.  It’s also better to ask sooner rather than later.

I found that there’s loads of support available within the university, particularly if you have a chronic illness, which I’ve found absolutely vital. My DSA and reasonable adjustment plan means that I have a mentor, as well as things like extended library loans.  If there is help offered, take it.

Student’s Union and Societies

Don’t drop out of uni until you’ve joined at least one society.

They are so good for helping you meet new people, who often become your friends.

I’m lucky enough to have ended up on the committee of RAG this year, which not only looks great on a CV but means I’ve met loads of people and got involved in plenty of things that have helped to fill my week up – all while helping great, local causes.

 

If I think of anything else, I’ll add it in – but for now, that’s my first year of uni over.

Now to work and enjoy the summer while it lasts!

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Zip Zip Hooray

Last weekend my sister Emily and I took to the skies on Zipworld UK’s Velocity to raise money for our chosen charities.

OUR CHARITIES

I was raising money for Climbing Out, a charity that takes teenagers and adults who have experienced life changing illness or trauma on a week’s outdoor adventure holiday in order to rebuild their confidence and reduce isolation, something that often comes hand in hand with chronic illness.  I’ve been lucky enough to go on one of the Climbing Out programmes and have therefore seen the great impact it can have, so it was definitely a worthy cause to raise cash for.

Emily was fundraising for the Believe and Achieve Trust, a charity close to both of our hearts.  It was set up in memory of my friend Alex, and aims to raise awareness of meningitis but also provides monetary grants for young people in Tameside who would like to achieve in sport but have various barriers in their way.

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Both of the charities we raised money for are relatively small, grassroots charities – which I feel makes it all the more special.  I know that every penny we raised will go to helping other people. And that’s all that matters, isn’t it?

If you donated to us, thank you so much.

THE ZIPWIRE

It was a ridiculously long day, as our actual zipwire experience started at 8am, which meant we were up at 4.45 and out of the house for 5 as we set off from Manchester.

When we arrived in Wales, we were a little early but we used it as a photo op.  The clouds were still low so it was a struggle to even see where we would be zipping from.  I think the fact it was in a cloud should have been a warning sign.

When 8 o’clock came around, Emily and I went to the briefing area and were told a bit about the experience and what to expect.  We started with the ”little zipper” (which wasn’t that little) and moved onto the ”big zipper.”  This took around 15 minutes by truck, I think mainly due to the uneven surfaces and steepness.

It started off with us getting weighed (it’s all very precise so that they can measure your safety in the winds etc), and then we were given our kit which consisted of a sort of onesie type suit, followed by a ”flying suit”, goggles and a helmet.  I was a bit gutted as I’d bought a cheap go-pro, but it didn’t actually fit into the helmet safely so I couldn’t take it up with us.  I wish I had known that you could hire one when you’re there!

You then go by foot to the little zipper, and get briefed on what you actually have to do. They hook you on, then you get into a press up type position while they bring down the flying suit and secure you fully. Depending on your weight, which they wrote on our wristband, they’d then put different coloured parachutes onto you which acted to slow you down in the winds.  We were also told at which point to put our hands out… Though I was wearing my glasses under my goggles. They had both steamed up so I could not see a thing and was just hoping for the best.

We survived that and started getting super excited for the real thing, giggling slightly manically. I also realised that I have 0 core stomach muscles as the truck was at such a steep angle and I kept slipping down the truck’s bench. Slightly embarrassing. The views were good on the way up.

When we got to the top we were about 5th/6th in line so got to watch a few people zipping down before us. It was a similar set up to the little zipper, just higher up with better views. It was quite funny watching people bobbing around head first as the wire bounced as people got off at the other end. Until it was our turn!

Going down the wire was a really fun experience (despite only lasting 57 seconds!) and the views of the slate quarry were incredible.  The blue of the lake was breathtaking and I felt liberated the whole way down.  Zipworld UK provide you with a free video of yourself (it was a little bit big brother) on the line, so Emily found it most amusing that I was laughing to myself both at the top of the line before setting off and has since put the video of me with my arms out to High School Musical’s ”Breaking Free.” (As much as I hate to admit it, she is really funny.)

Overall, I really enjoyed my time at Zipworld UK (despite midges eating us all to death) and would recommend it – but take a go pro! The whole thing lasted about an hour and a half.

Let me know if you’ve been and what you thought, and once again thank you to those who sponsored us!

 

 

 

 

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Another awareness day?

Yep. Sorry.

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You know you have M.E when the coffee just doesn’t hack it.

I have fifty minutes left to write this.

May 12th is M.E awareness day.

To be honest, writing that I have M.E is something I don’t enjoy doing.  I almost feel uncomfortable. And not just because it’s a rubbish thing to have, but because the stigma of the condition is sometimes too much to deal with.

Lazy, yuppie and work-shy are just a few of the words thrown around in relation to M.E, but if you are a person who thinks that, please let this post be a reminder of the reality people with the condition face.

After having meningitis and almost-kidney-failure, which is totally a medical term, my body decided it had been working too hard and it needed to shut down for a while.  That’s how my paediatrician explained my illness to me, a pretty confused nine year old who was usually quite eloquent but just couldn’t quite put this one into words.

The following years are a blur, to be honest.  My younger teenage years are cloudy in my head- a mixture of attempting to attend school, trying to keep up with interacting with my peers, of physiotherapy, of being carried down the stairs by my amazeballs parents who refused to let me be reduced to a ball of ill, of wheelchairs, of hospital appointments.

Of course, there were happier times, but sadly the reality is that most of these times were followed by days or weeks in bed.

Fatigue drowned my body, as did pain and my lack of concentration impacted on my day to day life. One hour of home tuition a week would leave me too exhausted to function over the next few days.

Things got better.

I am now at university, and I have never counted myself so lucky as I do each and every day.  Yes, I moan about the state of my student kitchen and the amount of deadlines I have to do, but the alternative is much worse.

I can go out to the shops if I decide I want to, i’m lucky enough to be able to drive, to be able to work and study and read and all of those things that so many people take for granted on the daily. I’m even running a blinkin’ 10k.  OK, it might be more of a walk, but let’s face it – that’s an achievement in itself.

I try to be open about my experiences with M.E, because I know I am not lazy, or work-shy, or any of the words used to describe me.

I am someone who strives every day to be a better version of herself.  I am someone who will never accept failure in her work, or grades.

I am Rosie.

I am not my illness. I will never be my illness.

I am Rosie.

If you do have M.E and you’re reading this, please please don’t be disheartened. All it takes is time, patience and perseverance.